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Don’t Buy a Mobility Scooter Until You Read This


oeioke ibn sciitersIf you have difficulty getting around for any reason a mobility scooter may be in your future but before you run out and buy one, you should read this. It should answer most of your questions and if not it will provide links to sites that can be helpful. This is a serious effort to respond to questions based on my own experience of purchasing three mobility scooters over the past five years for my own use.

I am a 78 year old man with osteoarthritis and COPD (Chronic Obstructive Pulmonary Disease). Pain and limited lungpower make walking more than 50 feet difficult or impossible. Like many of you who have similar impediments I still want to be active, to move around on my own, go shopping, sightseeing and traveling. Mobility scooters have allowed me that freedom and they help to alleviate the depression caused by being disabled.

IMPORTANT. Before you decide that you need any kind of mobility assistance you should be as honest with yourself as possible. Surveys clearly indicate that people who own disability scooters and wheelchairs are likely to overuse them and could risk shortening their lives due to a lack of exercise. While I have both an indoor and an outdoor scooter I only use them when walking is not an option. I never use a scooter inside my home. Any amount of walking I can do is good for me even though it isn’t always comfortable to engage in that activity. Please keep this thought in mind as you read the rest of this report.

You’ve all probably used the supermarket-type electric shopping carts. Don’t supermarket scooter.jpgcompare them to mobility scooters, they are totally different because they are a single purpose vehicle. They are built to stay indoors, carry a lot of weight, turn around in an aisle and move slower than a glacier. All of those qualities are great for a supermarket but serve little purpose at home or for outdoor travel.

 

Will Medicare or private insurance pay for Mobility Scooters?

The best answer is that there are a limited number of cases in which either will offer any financial assistance and at best it will be only 80 percent. The fact is if you want a mobility scooter for the same purposes I do it is likely you will pay for it yourself. Medicare, Medicaid and private insurance all pretty much abide by the rules Medicare has set up to qualify for their involvement. (WARNING! If you are depending on Medicare, Medicaid or other insurance to pay for your scooter SIGN NOTHING until you have their approval in writing, know what kind of scooter they will approve and how much they will pay).

In order to qualify for Medicaid assistance in purchasing a scooter or wheelchair you must be able to provided evidence from your physician that you have a medical need for it. Medicare won’t cover this equipment if it will be used mainly for leisure or recreational activities, or if it’s only needed to move around outside your home. And — you may need to get your power wheelchair or scooter from specific Medicare approved suppliers. For more information you can visit Medicare.gov/supplier, or call 1-800-MEDICARE (1-800-633-4227) for more information. TTY users should call 1-877-486-2048. Or you can use this link for more information. https://www.medicare.gov/coverage/manual-wheelchairs-and-power-mobility-devices.html

If your ability to move around or walk very far has become compromised in some way and you are thinking about acquiring a mobility scooter, talk to your physician before you do anything else. You cannot declare yourself disabled, only a physician Medicarecan make that determination. If you are seeking government financial help for mobility assistance your physician will first have to formally make that declaration. He or she will use certain conditions to determine if you qualify. Most physicians use the criteria established by Medicare and Medicare Part B. Included in these conditions, as outlined on the Medicare website, are:

  • Overall strength – To operate a scooter you must be able to sit upright and have the strength in your hands to operate the controls
  • Upper body strength – If you have sufficient upper body strength Medicare may require you be prescribed a manual wheel chair rather than an electric mobility scooter
  • Ability to balance – If you cannot maintain your balance, you may not qualify for a mobility scooter

You should also be aware that if Medicare pays at all, they will only pay 80% of the cost of a vehicle and, again, only for use IN the home.  You must prove to Medicare via diagnosis by a medical professional that you are indeed disabled and unable to get around your home without such a vehicle. If you want a vehicle for outside use only, neither Medicare nor Medicaid will pay for it. Be aware, too, that changes in the law could have taken place since this was written so it is always best to refer to the links and numbers posted above.

How do I decide on a scooter?

The first thing you must do is determine exactly where you will use your scooter and why. Emotions aside, this decision should be practical and logical. Do you need it to get around your home? If that’s the case and the areas to which you need access are all on one floor with no steps or raised thresholds to cross, then a smaller, less expensive vehicle will do (some older homes are just not suitable for mobility scooters and maybe not even wheelchairs so retrofitting them to be more accommodating could become prohibitively expensive. If your home is compact with lots of turns and little room to turn around you may want to choose a wheelchair because of its tighter turning radius).

This link provides the names of all mobility scooter manufacturers with links to their specific products. https://www.mobilityscootersdirect.com/mobility-scooters/by-brand.html

Below is a striking example of the difference in scooters (specs provided by Drive Devilbiss Medical the manufacturer of the two scooters mentioned. I used these examples because I own them but you should be aware that there is a wide variety of scooters between the two mentioned here. All scooter sales companies have all the specs you need on any given scooter. You’ll find more detailed specs on them by clicking on this link. http://www.drivemedical.com/power-mobility).

Drive Medical Spitfire Scout three wheel, among the lowest priced scooters (about $600). Mainly for indoors.spitfire scooter

  • Maximum weight it will carry 300 lbs.
  • Top speed 4.25
  • Range on fully charged battery 9 miles
  • Turning radius 45.5“
  • Climbing slope 6 degrees
  • Ground clearance 2.5“
  • Base weight 49 lbs.
  • Battery weight 20 lbs.
  • Seat weight 16 lbs.
  • Total weight 85 lbs. This scooter can be broken down into three parts; the battery, the base and the seat.
  • Warranty 16 months on electronics and 6 months on the battery
  • Motor 270 watts

Drive Medical Panther four wheel heavy-duty, all-terrain mobility scooter. Expensive (about $3,000). Mainly for outdoors.  Drive panther 4

  • Maximum weight it can carry 425 lbs.
  • Top speed 8 MPH
  • Range on fully charged batteries 25 miles
  • Ground clearance 4 ‘
  • Base weight 145 lbs.
  • Battery weight 64 lbs. total for the two batteries)
  • Seat weight 55 lbs.
  • Total scooter weight 264 lbs. (only the seat is removable)
  • Warranty 24 months on electronics, 12 months on batteries.
  • Motor – 800 Watts

So back to the question about which scooter is right for you. If you anticipate extensive use in a variety of outdoor environments you are going to pay a hefty price for a “heavy-duty” or “all-terrain” scooter. If you only want something portable that you can throw in the trunk of your car and take into Wal*Mart or a shopping Mall your choices will be far less expensive but the tradeoff is that they need charging more often, won’t carry much more than 300 lbs. and are slow. Prices range from just under $600 to well over $6,000 for more elaborate models. I have a Spitfire for indoor use and a Drive Mobility Panther for outdoor travel. As mentioned earlier neither was paid for by Medicare, Medicaid or private insurance. I knew I did not qualify so I did not even apply.

What if I need to transport my scooter?

All mobility vehicles have the same challenge — you have to get them to where you want to use them. (THIS IS A MAJOR ISSUE, DON’T GLOSS OVER IT.) Some, like the bumper platformSpitfire Scout, require no added expense because it can be disassembled and tossed in your trunk quite easily often by the user him or herself (you can purchase a rear bumper platform that will elevate and secure the scooter for outside your car or van transportation but these can be costly)..

The Panther or one like it does not disassemble (except for the seat) will require a mechanism to lift it or pull it inside a van (these pieces can be expensive). Because my wife Robin is an artist who sells her creations at art fairs around the south and central U.S. we have a high top van. We cut the expense of transporting the scooter significantly by building a special compartment in the van winchwith access through the side door. A folding aluminum ramp cost about $200, a remote controlled winch was another $100 and we used one of those jump-start batteries to power the winch which cost another $100. The rest is easy. I drive the scooter to the edge of the ramp, connect the winch hook to the frame of the scooter and with a flick of a switch on the remote control, pull the scooter into the van. The whole process from setting up the ramp to securing the scooter inside takes about 5 minutes.

If you don’t want or need to transport your scooter and only need to drive it out your front door to the corner store then you will have very few problems. You may need a ramp to get in and out of the house and a place to store the ramp and scooter inside, but that’s about all. Remember, too, that indoor scooters are certainly capable of traveling outside the home but they don’t do well in any kind of rough or uneven terrain.

Just as small scooters can be used outdoors, heavy-duty scooters can be used indoors – sometimes. They usually don’t do well because of their size (the Spitfire Is 42 inches long and has no back basket. The Panther is 56 inches long without the rear basket and 62 inches with it). Heavy duty scooters are big, bulky and have a wider turning radius, so unless you live in spacious one floor home or apartment they are not of much use in a home. Outside of the home they are wonderful. About three times a week I take my Panther on the two mile round trip to our Publix Supermarket. I drive it right into the market, fill my baskets with whatever I need, go through the checkout and drive out again.

Once I decide on the size of scooter, should I get 3 or 4 wheels?

Both types have advantages and disadvantages. Three wheel scooters have a much tighter turning radius and are usually more maneuverable around the house and in tight places they are also a little lighter and sometimes a few dollars less than their 4 wheeled siblings. On the minus side they are not as capable in rougher terrains because they can tip onto their sides. I have had that happen a couple of times with an older three wheel scooter. avoid tipping picIf you approach a bump or curb at an angle instead of head-on you run the risk of tipping. Finding yourself on your side on a sidewalk, a berm or in the street with your groceries rolling around is not a comfortable feeling. When I tipped it was when crossing a street probably due to my driving error. A scooter doesn’t respond like a car or resemble the family auto in any way. If driven properly they are quite safe, but if you violate the instructions you could be seriously injured. When climbing a curb or going over an elevation in the ground the driver must be careful to follow the instructions in the owner’s manual. Most people ignore the instructions or warnings in a manual. Don’t! Read them a couple of times.

Do I need a Ramp for any reason?

folding rampAn often overlooked item is a ramp. If you keep your scooter in the house and want to take it out the front door, even if it is at ground level you may need a small ramp to keep from getting hung up on the threshold. If you are going to do that often, please consider having a ramp built according to the disability codes in your city. If you rarely go out, a small folding aluminum ramp could be a great help. The weight of a ramp, though, depends on how long it is and the ADA (Americans with Disabilities Act) has requirements for how long a ramp should be. This link will help you determine the proper size for your needs. https://mobilitybasics.ca/wheelchair-ramps/ramp-length-calculator Google mobility scooter ramps for your city and you’ll likely find several places from which to choose. If not you can order from places like Amazon, Google, EBay and several others.

Is ground clearance an important consideration?

Ground clearance is another important issue to consider in your scooter. You will need enough to be able to clear objects that might get in your way. The term describes how far off the ground the lowest point of the scooter not in contact with the ground is. Ground clearance is an very important consideration for outdoor scooters that might need to traverse an uneven or poorly maintained surface. Too little clearance can result in getting your scooter hung up and unable to move, or worse yet, might cause it to tip over.  It is important, too, in those cities where standard disability curb-cuts have not been constructed on sidewalks. You will often find either a standard old curbs or the sloped variety.  A scooter with less than 4 inches of ground clearance may have some trouble negotiating these hazards. If your scooter is to be used around the home, then clearance is not as important but if you are going outside the home, you may want to consider heavy-duty or all-terrain scooters.

Do I really need the “lighting package” that scooters offer?

Many people ignore this feature but you could really be sorry if you find yourself out headlightat night in the dark. Even if you think you will never have to take your scooter outside, I can assure you that at some point that’s where you will find yourself. For example, we have dogs. Dogs need to be walked. I have difficulty walking so I learned to take them for a “scooter walk.” If you have an indoors scooter it likely will have minimal ground clearance. You may need the lights to see the uneven ground ahead of you to avoid damaging your scooter or, worse yet, tipping and hurting yourself. Scooters, even the big ones, are hard to see so if you decide to purchase a bare bones, no lighting scooter, go to Wal*Mart or Target and purchase a headlight, a taillight and some reaarlightsreflectors for the back and sides. You should be able to get all three for under $20 at the stores mentioned, at any bicycle supply dealer or from any of the on-line sellers like Amazon and EBay. All scooters are very close to the ground and it pays to be lit up like a Christmas tree along with having one of those bicycle or scooter safety flags on the back.  I don’t recommend driving your scooter on the street but sometimes it is unavoidable….that means you should also have a rear view mirror and even a horn.  You need to be totally aware of your surroundings and you need to let your surroundings know you are there.

I weigh less than 200 lbs. and the scooter will carry 300 isn’t that enough?

Maybe 300 lbs. is adequate, chances are it is but take nothing for granted. Think about the situations you might be in and what you might need to carry in your lap, on the floor and/or in the basket. Your scooter should be able to support what you need like oxygen tanks, crutches, a walker, drinks, groceries or other purchases. Taking the time to consider your needs could save you money in the long run.

Is the size and type of tires important?

Yes, those are important considerations. There are two types of tires; pneumatic (air-filled), and solid-core tires (no flats). Air-filled tires are a good choice if the quality of your ridetire.jpg is important. That’s especially true of the larger scooters that have four-wheel suspension (springs) where the shock of hitting a bump is dampened before it gets to your rump. The air-filled tires help absorb some of the shock. Smaller scooters don’t have suspension of any kind so they ride like a skate board anyway. Most of them don’t come with pneumatic tires. There are circumstances where tires become extremely important and that is almost always outside of the home. Bigger, wider, tougher tires are a necessity if you are traveling over rough terrain, near construction sites, in sand or grass or a number of other situations. Thin, small tires likely will get stuck very quickly in adverse conditions. Scooters for use out of doors should always have tires that are at least 10 or 12 inches in diameter and 3 inches wide (the Panther’s tires are 14 X 4)

How long does it take to charge scooter batteries?

How deep is the ocean? It depends on the scooter and the batteries. Manufacturers list that information and more with each scooter but it there are several variables. Usually the first charge should be overnight. After that, look to your owner’s manual (many owner’s manuals can be downloaded before you buy a scooter just Google (brand and name of scooter like Spitfire) owner’s manual).

When the maker says a scooter has a range of 20 miles, is that accurate?

rangeWell, kind of. I’m not sure if all manufacturers use the same criteria for making that determination but how far you can go depends entirely on how much weight the scooter is carrying, how fast you are going and if the battery was fully charged when you left.  The fact is I rarely ever even consider the range because most of my trips are short and I put the scooter on the charger when I return from my journey. In five years of riding scooters I have never even come close to running out of power.

I’m sure you have other questions but I hope those provided cover your key concerns. Scooters aren’t for everyone. Some people don’t have the coordination, strength or concentration to operate a scooter. Hopefully your physician will tell you that. In many cases a power wheelchair might be a better choice, but that’s a discussion for another day. I have no experience with wheelchairs and will have to do considerable research to be sure I’m offering accurate information.

Scooters are not meant to be like motorized ATVs, motorcycles, or SUVs. They werenno to atv not designed or built to be recreational vehicles either. They are designed to help disabled persons get from point A to point B. A mobility scooter is not a toy but it is also not a car or bus. You can have the most decked-out, high-priced scooter ever made and it still won’t perform like a car or an ATV. Your 150 lb. scooter traveling at 7 miles an hour is no match for a 3500 lb. car going 45 or 50. Remember that if you think about getting off the sidewalk and onto the street. Be cautious, responsible and extremely careful. Keep in mind that you have a scooter and it should be ridden on sidewalks and paved areas. Avoid riding on streets. Even the fastest of scooters will only go 15 miles an hour, far too slow to stay with traffic and far too small to be seen. However, if construction or other barriers force you to get into the flow of traffic on a street and your scooter has a lighting package turn on your flashers, put up a safety flag and look for a place to get back on the sidewalk as fast as possible.

Good luck with your decision and please, be careful out there.  If you have comments or questions include them in the space provided. If you would like to contact me directly you can at bob@baronson.org

And from where I sit, that’s the truth.

Peace.

What Happens If and When Obamacare is Repealed


cartoon

Donald Trump and the Republicans have vowed to repeal and replace the Affordable Care Act and it is very likely they will follow through. If they repeal the ACA and do not replace it with something comparable or better, as many as 25 million people could be without insurance by 2020. Additionally, many if not most people may have less comprehensive coverage and higher co-pays, but that all depends on what kind of replacement plan the congress approves if any. And that — is only the tip of this ugly iceberg.

This blog only deals with repeal while the House has approved a replacement bill, the U.S. Senate has not. We will cover that as thoroughly as possible when it happens.

Few remember this, but just before ACA passed in 2010 the health insurance companies hiked their rates significantly. Since then they have raised rates several more times. Let’s be clear here, ACA is NOT raising your rates, there is no provision in the act that allows for that. Many have complained that ACA is responsible for increased rates, but that’s really an empty claim because we don’t know what insurance rates would have done if there was no ACA. One thing for sure, rate hikes always come from the Insurance companies. If ACA is repealed you will get far less coverage, but you can be sure the insurance companies don’t reduce their rates by a single dime.

If ACA is repealed everyone will feel it, even the very wealthy. The difference is they can afford to self-insure– maybe. Today the cost of some procedures and care is so high that it might even hurt the mega rich to have to pay out-of-pocket. 10 years ago I had a heart transplant. According to the National Transplant Foundation, the average cost today for the same procedure would be $1.2 million. That price includes first-year medications and care. You can review other costs here. (http://www.transplants.org/faq/how-much-does-transplant-cost). A heart/lung transplant would cost $2.3 million. That would make even a wealthy person sit up and take notice.  (If you would like to examine the effect of ACA on health care costs Gary Cameron of the Reuters news service.wrote this for Time.http://time.com/money/4503325/obama-health-care-costs-obamacare/ )

The Trump administration is also talking about cuts to both Medicare and Medicaid. It remains to be seen what that means but this congress is in a cutting mood, so it is unlikely that their actions will result in anything beneficial to many with chronic illnesses. You can also expect that if there was ever any hope of extending coverage for anti-rejection drugs past 36 months for Kidney transplant patients it ended with Trump’s Inauguration.

Very few people are aware that Medicare is also affected by repeal of Obamacare. There are several areas that will be negatively impacted but the part that helps seniors with Prescription costs will take the biggest hit.

The Senate bill slashes tax revenues by $701 billion over a decade, while reducing Medicaid spending by $772 billion versus current law. Overall, the Senate bill reduces federal health care spending by $1 trillion.

The Center for Budget and Policy Priorities estimates the bill’s tax benefits for the 400 highest earning households in America alone are equal to the cost of keeping Obamacare’s Medicaid expansion in four states that cover 726,000 people.

  • The ACA helps seniors in the donut hole until it is closed. Copayments required for brand-name and generic drugs are being phased down to the standard 25 percent by 2020. Brand-name drugs discounts from manufacturers increase each year in the coverage gap. Copayments for generic drugs are reduced by seven percentage points each year until the coverage gap is eliminated.
  • In 2016, seniors receive a 55 percent discount on brand-name prescription drugs and a 42 percent discount on generic drugs, which is applied at the pharmacy. Below are the amounts that beneficiaries will pay for their medications until the donut hole is closed in 2020.
    • 2016: 45 percent for brand-names and 58 percent for generics
    • 2017: 40 percent for brand-names and 51 percent for generics
    • 2018: 35 percent for brand-names and 44 percent for generics
    • 2019: 30 percent for brand-names and 37 percent for generics
    • 2020: 25 percent for brand-names and 25 percent for generics

Ever since the Affordable Care Act (ACA) passed in 2010, Republicans have vowed to repeal acait. They have made many claims about what a “Disaster” it is, but offer little in the way of evidence other than point to increased premiums. Premiums, though, were out of control long before there was an ACA and many experts say that if anything the sweeping health care bill slowed their increase. If Republicans are successful in repealing the act you will be affected in many ways, now and in the future. I’d like to keep this blog relatively short so I will only address four issues here, but they are big ones.

  1. Pre-existing conditions
  2. Children on your policy until age 26
  3. Medicaid changes
  4. Medicare adjustments

Effect Number One. Pre-existing Conditions

People have short memories so let me remind you what the health insurance environment was like prior to 2010. Example. A woman I know was having problems sleeping,, that’s all. She was in otherwise excellent health. To help her sleep, her doctor prescribed Remeron which is also an anti-depressant. Due to family circumstances, she had to move to a different state, a state in which her current health insurance had no coverage. She thought nothing of it because she was healthy, so she shopped around for new insurance, found one she liked and applied. Almost immediately she was denied coverage due to a pre-existing condition of depression even though she was not suffering from depression. The drug, Remeron, was prescribed to help her sleep but the new insurance company ignored that detail. Her only option was to keep her old insurance from another state even though she was out of network. Under those circumstances, this healthy woman had become uninsurable because of one medication that was not even prescribed for the purpose identified in the rejection notice. That is what we likely will be returning to. But there’s more.

conditionsIf the ACA is repealed without a replacement plan and maybe even with one here’s what you can expect.

Let’s say a young couple finds they are about to have a child. The husband just got a new job in another state so they will have to move and get new insurance as well. Here’s what they are likely to run into if ACA is repealed.

  • Pregnancy could easily be considered a pre-existing condition, at least the insurance companies would have that option. That means when this family looks for new coverage insurers could deny it or charge exorbitant rates.
  • Even if they got insurance, the plan would likely not include maternity coverage, as was the case for over 60 percent of enrollees in individual market plans in 2011.
  • They’d get no financial assistance to help ensure they can find a good plan within their budget and there would be no help in paying their out-of-pocket costs.
  • Healthy pregnancy, births, and newborns programs would no longer exist, putting the family at greater risk for other health problems.
  • And the family would likely have to pay out of pocket for each new baby visit and any ensuing treatments, injections or other procedures.

Some estimates indicate that nearly a half of all Americans have a pre-existing medical condition that could make it difficult to find insurance, and about 3 million of them are now insured under the ACA. If and when it is repealed those who have insurance could lose it and those without insurance, or who leave their old plans for any reason such as job change, divorce, or relocation, may find it impossible to get a new plan. The Kaiser Family Foundation projects that if the pre-existing conditions provision is repealed, 52 million Americans could be at risk of being denied health care coverage.

Effect Number Two. Children Covered by Parent’s Insurance to Age 26

If ACA is repealed and not replaced with something equivalent or better, that means thatyoung-healthy-adults once you turn 19 or are no longer a full-time student, you are on your own for insurance coverage, increasing the financial burden on young adults who are unemployed, underemployed, contractors, working for small companies, or those starting their own businesses. Young people are less likely to get seriously ill and often don’t use insurance when they have it. Insurance companies would love to have these men and women paying premiums again, though, because they use so little of the coverage and help to defray the cost of covering others.

This is a popular benefit among some Republican office holders because their children are affected so it might be added to whatever replacement the GOP drafts, although the age limit could potentially get lowered by a year or two.

Effect Number Three. Medicaid

One of the most appealing aspects of health-care reform for many was the ability to get subsidized insurance policies, reducing out-of-pocket costs. According to Kaiser Health medicaidNews, all but 19 states expanded the income limits for people to get Medicaid insurance and in some cases limits were pushed to 300 percent of the federal poverty level. Also, tax credits beyond that helped even middle-class workers and families afford their monthly premiums. The Affordable Care Act was affordable largely because of the Government subsidies. While all Republicans in congress opposed the expansion of Medicaid, many Republican State Governors accepted the plan for their states. Medicaid is funded by the Feds but run by the states. If ACA is repealed and Medicaid expansion goes out the window the states will be left with the choice of funding it or telling their citizens that they are cutting the program. That could have disastrous effects for Republicans in coming elections.

Based on the resistance that red states had to the idea of expanding Medicaid coverage in the first place — even with the federal government covering almost all of the expense — it will not be surprising to see a GOP plan that either decreases or completely remove the tax credits or other subsidies. Almost all Republicans agree it must go. There seems to be little agreement on if or how to replace it.

Effect Number Four. Medicare  Cuts

Here comes trouble. Like Social Security this is the healthcare third rail, it can mean political suicide for anyone that makes any negative changes in the national health care system for people age 65 and over. The great majority of them are not working, have no income other than Social Security and some savings and they are uninsurable outside of Medicare (supplemental programs excepted). Some see Medicare as totally separate from the ACA and in some ways it is, but they are also intertwined. Too many seniors think they are immune from change, they are not.

According to the Kaiser Foundation, a full repeal of ACA would restore higher payments fordonut-hole services performed under the managed-care portion of Medicare known as Medicare Advantage.  That, then, could lead to increased Medicare Advantage premiums. It could also mean an end to free preventive services and could result in greater premiums and increased out-of-pocket costs, or both.

Perhaps the most notable change would be to reverse efforts to close the “doughnut hole” for prescription drugs. One provision of the Affordable Care Act dramatically cut the amount that seniors on Medicare have to pay for their medicines under Medicare Part D. prior to the ACA’s passage, beneficiaries got some coverage up to a certain dollar amount, and then none until high-dollar, catastrophic coverage provisions kicked in. Once in that “donut hole” seniors paid the full price. Under ACA that coverage gap was supposed to end in 2020.

Now here’s what they are NOT telling you. It is now projected that ACA spending between now and 2020 is $1 trillion LOWER than the original Congressional Budget Office estimate. That means the trust fund for Medicare is now projected to remain solvent 11 years longer than before the Affordable Care Act was enacted. Strangely none of the repeal advocates has mentioned that fact.

For these reasons, it is important to be clear. The repeal of Obamacare will mean that Medicare beneficiaries will have to pay millions more for prescription drugs and won’t have access to free preventive care, while the program itself will be put in financial jeopardy.

As long as this blog is,  it doesn’t begin to cover the full impact of ACA repeal and it says nothing about replacement because we have been unable to find a single plan for doing that that has been released. There are several people who say they have plans, but none have provided documents yet.  We’ll keep our eye on it and do what we can to keep you informed. We’ll report more as we can.

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bobBob Aronson is the founder of Facebook’s 4300 member Organ Transplant Initiative and also of this site, Bob’s Newheart. Look through the index and you’ll find nearly 300 blogs of interest to Transplant patients, their families, friends, caregivers, donors and donor families. 

Mobility Scooters and Wheelchairs. Who Pays and Other Good Stuff


 

 

husband_inside_the_car_lady

Nobody grows up obsessed with the idea of getting a mobility scooter or a wheelchair. They are not on anyone’s wish list unless your physical mobility is limited. While these means of transportation offer disabled people a new sense of freedom, they also bring some new and unexpected realities to life.

This blog is primarily about how to select a mobility scooter Medicare 2and how to determine if Medicare will pay for it. At some future date I might focus on other issues important to the disabled.

You will likely find that my emphasis is on scooters and that’s only because they the most common and least expensive way to get from one place to another if walking is not an option. Also, I am a mobility scooter user. We may address motorized wheelchairs specifically later. There are, though, some commonalities both share. One thing is certain. Your life is in for some big changes once you accept the keys to your new ride.

bob on scooter bahamasScooter or wheelchair? That’s probably not awheelchair decision you will have to make, your physical condition may dictate what will work best for you, Disabled World offers this explanation. (http://tinyurl.com/b4gxgl)

Issues to Consider when Buying a Mobility Vehicle:

  • Electric wheelchairs tend to be far more expensive than mobility scooters
  • If you need to transport your personal mobility vehicle, a compact mobility scooter can be folded up to fit in a trunk or a back seat. Alternately, you can carry them behind a car with a trailer. Most electric wheelchairs do not fold and are too heavy for a simple trailer.
  • If you have a wheelchair-modified van, it is easier and safer to tie down an electric wheelchair than a mobility scooter
  • An electric medical scooter is steered with bicycle-like handlebars, whereas electric wheelchairs use a joystick. If you have issues with upper body mobility, a wheelchair might be easier to control.
  • If you have posture issues, a wheelchair usually offers more features and support to help you, including motorized stand, tilt, and recline options.
  • If you need to stay in your mobility aid for most of the day, a wheelchair is usually more comfortable.

The right choice of a personal mobility vehicle depends on how you are planning to use it.

  • Are tight corners an issue?
  • Would you like to fully enjoy the great outdoors, or are you more interested in shopping?
  • Will you be running local errands, using public transportation, or using your own vehicle to move your personal mobility vehicle?

Once you answer these questions, you will be able to make the right choice for your specific situation.

I am the owner of two mobility scooters because I have COPD and can’t walk very far. One of the scooters is for outside the home and the other is for venues that offer flat, even surfaces upon which I can ride. Both of my scooters were paid for privately, no government funds were applied for or offered. If you want every minute detail about the process of acquiring mobility vehicles go to https://www.medicare.gov/coverage/manual-wheelchairs-and-power-mobility-devices.html  If a summary will satisfy you read on.

who paysLet’s start with the most common question. “Will Medicare pay for my wheelchair or mobility scooter?” That single question is the cause of a lot of confusion, because the answer is, “Maybe.”

There are many suppliers who will tell you that Medicare will pay and you may even hear it from trusted friends. Here’s the truth. Medicare will pay up to 80% of the cost of an “approved” scooter or wheelchair if the supplier accepts Medicare assignment. That means they have to agree in writing that they will accept what Medicare will pay and you can be billed for no more than 20 percent of the total. If the supplier does not accept Medicare assignment Medicare will still pay the standard amount, but the supplier can send you a bill for any amount they choose.

So, back to the answer. For Medicare to pay for a manual images (1)(unpowered) wheelchair, a senior must have a condition which prevents them from moving around in their home as they go about daily living. Their disability cannot be resolved through the use of a cane or walker and the wheelchair cannot be necessary only for use outside the home.

For Medicare to pay for an electric or powered wheelchair or scooter the individual must have the same needs as for a manual wheelchair but they must prove they do not have the physical strength to operate it. In addition they must demonstrate they have the ability to control the powered device without hurting themselves or those around them. Key pointimages (2)
here. You have to show that you need it to get around in your home and that your home is barrier free.

In either case, getting Medicare to pay is not an easy task. A written order from a doctor is necessary which must state the medical reason for the need and the type of wheelchair which is required. Be very careful. Medicare fraud is rampant and usually committed by suppliers or others who sell the goods, services, medicine and medical equipment that seniors need.

downloadRecently I met a man my age who had a scooter identical to mine. I asked how he liked it and he told me that not only was it a great scooter but that Medicare had paid for it. Now I know better than that so I asked how that worked and he explained that with the help of his scooter supplier he found a physician who provided the medical certification he needed. Beware – if any supplier has a list of Doctors you can see who will approve your purchase it is likely you will get one fraudulently.

The Medicare website says this about getting started on the road to acquiring a scooter or wheelchair. http://www.medicareinteractive.org/page2.php?topic=counselor&page=script&script_id=189

“Before you get your wheelchair or scooter, you must have an office visit with your doctor. The visit should take place no more than 45 days before the DME (Durable Medical Equipment) order and should deal with the medical reasons you need the wheelchair or scooter.

Your provider must sign an order or fill out a prescription or certificate that states that you need the power wheelchair or scooter to function in the home. The order must state:

Your health makes it very hard to move around in your home even with the help of a walker or cane;

  • You have significant problems in your home performing activities of daily living such as getting to the toilet, getting in and out of a bed or a chair, bathing, and dressing;
  • If you need a power wheelchair, you cannot  use a manual wheelchair or scooter, but you can safely use a power wheelchair and
  • The required office visit with your doctor took place.

The equipment must be necessary for you in the home but you can also use it outside the home. You can get only one piece of equipment to address your at-home mobility problem. Your doctor or other provider will determine what equipment you need based on your condition, what equipment can be used in your home, and what equipment you are able to use.”

Now some other scooter issues.

As we mentioned the scooter has to first be approved for use in your home. If that has been done then you must consider where else you might use it. Medicare might give you some leeway in your choice of vehicles, but not much and if they do and you choose one with all the bells and whistles you could wind up with a hefty bill.

Outside the home, here’s what you should consider.

  • How will you transport it? Assuming you might want toload em up pack it into the back of the mini-van how will you do that? Your scooter will have to be transportable, that means lightweight and easy to disassemble and assemble unless you can afford a power ramp on the back of your vehicle, one onto which you can drive so there’s no lifting or disassembling involved.
  • How much clearance is there between the bottom of the scooter and the road below? My bigger scooter has a little over 5 inches. The new, smaller one has but 2.5. That means if you get into an area without curb cuts you will be unable to use sidewalks and take my word for it, the streets are no place for scooters or wheelchairs. They are much too slow and often invisible to drivers of cars and trucks. Smaller scooters with low clearance can get stopped by ruts, bumps and uneven surfaces very easily and if you are alone, what do you do?
  • Lighting. Most scooters and wheelchairs don’t come with it. Buy a headlight and taillight anyway, you never know when you will be caught out after dark and a scooter or wheelchair without lights is an accident waiting to happen. Some mobility vehicles don’t even come with reflectors, buy a couple of those as well.
  • Safety flag. You should also purchase a safety flag that flagstands about 4 or 5 feet high from the back of your vehicle. It will help both drivers and pedestrians see you coming and add some safety insurance.
  • A basket. Most come with a basket, but if not get one. You will need somewhere to put your “Stuff.” You can even buy drink holders that snap on to your armrests.
  • Because I drive my scooter to the supermarket about a mile away a couple of times a week I drive though areas where homes are being remodeled or built and where other construction work is done. I had several flat tires until I went to a local bicycle shop to have solid rubber tires installed. No more flats. Some will tell you that solid rubber tires offer a much bumpier ride, but the fact is that scooters and wheelchairs ride like skate boards anyway. Get the solid rubber. If you are a purist and insist on pneumatic tires, get a patch kit and a tire pump and keep it in the basket of your scooter because you will need it.
  • Cane holder. If you use a cane you’ll need a holder. The maker of your vehicle probably has them as an accessory or they might even include one at no extra charge.
  • Rear View Mirror. It may sound silly but consider this, you are driving and you need to know what’s in back of you as well as what’s ahead. Rear view mirrors will come in quite handy. You will realize how important they are when you back into someone for the first time.
  • Batteries. How far will they take you, how long will they last and do they come with a charger?
  • Capacity. How much weight will it safely transport?
  • Test drive. Ask to take it somewhere out of the showroom…around the block, into a mall, somewhere where you can get the “feel” of the scooter.

Those are the basics. I know I have only scratched the surface, but perhaps you will find something useful here anyway.  You can add to the list once you have become an experienced mobility vehicle driver – and – you will add to the list. I purposely did not get into Scooter/Wheelchair brands and suppliers. Just Google Mobility scooters/wheelchairs and you will get all the information you need. There are also several Internet forums you can join to chat with other users about their experiences.

wheelchair facing stepsFinally, this word. There have been admirable attempts at making the world more accessible, but they are too few and still too rare. In many buildings you will find stairways and no ramps. Disabled parking is often abused by those who don’t need it. Mobility carts in supermarkets and other businesses are wonderful, if you can get one.  Again, too many people who don’t need them, ride them.  Even the sidewalks can be problematic when cars parked in driveways overlap and block the sidewalk, forcing scooters and wheelchairs into the street. And, most importantly those of us who are disabled are simply not seen.  I can’t tell you how many times people are looking over my head as they walk right into my scooter.

Elevators also present a problem.  If I can get my scooter in all mqdefaultthe way to the back of the elevator before anyone enters there is usually room for several more people and often they will stand back and allow me to do that. On other occasions, though, the crowd surges around me, packs the elevator and then as the door is closing they will look surprised when they see there is no room for me even though I was there first.

Anyone who has a mobility vehicle will have their own stories to tell. None of us want special treatment we only want to be noticed and considered. And, oh, there is one more item. Don’t be surprised when while on your scooter in the company of your significant other a clerk or salesperson will address them not you. For example it is not uncommon for a clerk who would like me to get up to look at something to say to my wife, “Can he walk?” She often says, “Yes, and he hears and talks, too.”

So, the next time you see a disabled person think for just a moment about what it must be like to be unable to walk very far if at all and how riding a scooter or wheelchair presents a whole new set of barriers. A little consideration goes a very long way.

I have written two other blogs on mobility vehicles here on Bob’s Newheart. You can find them by clicking on these links.

https://bobsnewheart.wordpress.com/2013/10/09/mobility-scooter-extended-test-drive-report/

 

https://bobsnewheart.wordpress.com/2013/07/10/mobility-scooters-a-first-time-users-observations/

 

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bobBob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love. You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

 

Why Prescriptions Cost So Much and What You Can Do About It


cartoon
A couple of weeks ago the news was filled with stories about Martin Shkreli the CEO of Turing Pharmaceuticals, a relatively small drug manufacturer. Some media branded him with this headline world's biggest a holebecause he raised the price for one pill of Daraprim, a 62 year old drug,
from $13.50 to $750. That’s about 5,000 percent. Now, he says he will lower the price, but there’s no indication of how much or, as of this writing, when (According to Web MD Daraprim is used with other medication (such as a sulfonamide) to treat a serious parasite infection (toxoplasmosis) of the body, brain, or eye or to prevent toxoplasmosis infection in people with HIV infection).

As it turns out, though, the “World’s Biggest A–Hole case is not in the least bit unusual, it happens with pharmaceutical companies with great regularity as a tactic to increase profits on older drugs, drugs that have long since paid for themselves.

The global market for pharmaceuticals topped $1 trillion in sales in 2014. The world’s 10 largest drug companies generated $429.4 billion of that revenue. Five of these companies are headquartered in the U.S. They are: Johnson & Johnson, Pfizer, Abbot Laboratories, Merck and Eli Lilly.

Johnson and Johnson, America’s biggest pharmaceutical manufacturer raised prices on over 130 brand name products this year alone. Merck & Co. raised the price of 38 drugs. The increases in the U.S. have added over a billion dollars of revenue in the last three years. So, while Mr. Shkreli may get the award for being the biggest you know what, he is in good company — only the others were smart enough not to brag about it.

Before I go on it is important to point out that my interest in the topic is both personal and professional. I am a senior citizen, who has had a heart transplant and who also has Chronic Obstructive Pulmonary Disease (COPD). I take a good number of prescription drugs and despite having Medicare Part D insurance I still pay thousands of dollars a year for my prescriptions. Most of the drugs I take have been around for quite a while, but not long enough to allow the sale of generics and because there are few if any pricing restrictions, most of my meds are outrageously high priced.

One of the drugs I take is called Foradil. It was approved by the FDA in February 2001 for the maintenance treatment of asthma and the prevention of bronchospasm in reversible obstructive airways disease. Despite being on the market that long, it still retails for about $250.00 for a 30 day supply. Spiriva is another COPD drug and is often taken with Foradil. It retails for about $350.00. I take about a dozen drugs and these two alone total over $600.00 a month. Insurance cuts that cost in half, but they are still expensive. Because of these prices I know of many seniors and others who have to choose between eating and paying for their prescription meds.

In Europe, Asia, Australia and anywhere else with some form of socialized medicine strict government regulation helps prevent those kinds of actions and subsequently keeps prices down. Things are a whole lot looser in the U.S.

In 2013 each of us spent over $1,000 on prescription drugs. That works out to $429 billion. In case that figure boggles your mind, let me boggle it more by showing you what it looks like in black and white — $429,000,000,000. By anyone’s measure that’s a lot of money. To put it all in perspective Prescription medications make up close to 10 percent of the $2.9 trillion annual total spent on healthcare in the U.S.

Americans spend more on drugs than any other country in the world and – we also pay more for them than any other country.

big pharmaBefore we go into detail on why prescription drugs cost more here than anywhere else, let’s look at the biggest drug and biotech companies in the world. They account for more than a third of the industry’s total market share according to the World Health Organization. We won’t go into detail but here’s the top ten and their 2014 revenue.

  • Gilead Sciences $24.474 billion.
  • Bayer $25.47 billion.
  • AstraZeneca $26.095 billion.
  • GlaxoSmithKline $37.96 billion.
  • Merck’$42.237 billion.
  • Sanofi $43.07 billion.
  • Pfizer 49.605 billion.
  • Roche $49.86 billion.
  • Johnson & Johnson $74.331 billion.

If you were to ask any of those companies why prescription drugs cost so much they would likely tell you that the price reflects the immense costs of research and development. They would explain that it costs millions andcosts millions of dollars to develop a new drug and then millions more to get through animal and human studies and FDA approval, and that’s partially true. Partially. Those costs are very high, but what big pharma won’t tell you is that you are also paying for the costs of marketing the drug to physicians and patients and those costs dwarf the research and development expense. http://tinyurl.com/pr23j3q

The world’s largest pharma company, Johnson & Johnson, spent $17.5 billion on sales and marketing in 2013, compared with $8.2 billion for R&D. Most of that marketing effort is aimed directly at physicians, the people who write the prescriptions, rather than customers like you and me. It should be noted that the U.S. and New Zealand are the only two countries that allow any form of advertising for prescription drugs.

No sane person can object to a company making a profit, it’s part of the American way, but the drug industry’s profits are excessive. At the risk of being accused of repetitiveness I must say again. We pay significantly more than any other country for the exact same drugs. United States spends more than $1,000 per person per year on pharmaceuticals. Per capita drug spending in the U.S. is about 40 percent higher than Canada, 75 percent greater than in Japan and nearly triple the amount spent in Denmark. So why is that?

Well, first the U.S. is a very rich and therefore lucrative market because we use more medicine than any other developed country. We account for 35 percent of the world market for pharmaceuticals. Americans have become quite accustomed to leaving their doctor’s office with a handful of prescriptions.

Due to our ill health and our wealth, companies often choose the U.S. in which to launch new products. And, because the US market is so big and profitable, investments in research and development have long been steered towards meeting clinical needs.

But if we Americans take more prescription drugs, we also pay an arm and a leg more for them. Why? Because other countries have tough regulations about pharmaceutical prices and they set reimbursement limits. MedicareAnother smart thing they do is to agree to pay for a drug only if the price is justified by the medical benefits. In the U.S., Medicare which is the world’s largest buyer of prescription drugs is prohibited from negotiating prices with drug companies. If the company says that a pill is $100, Medicare has no choice, but to pay it if the patient needs it. They have no wiggle room and that costs taxpayers billions of dollars a year in a direct giveaway to the pharmaceutical behemoths and speaks to the power of their lobbyists.

Speaking of lobbyists, here’s the real rub. The pharmacy industry views congress as a place to invest against future price controls and this is what really adds to the price of your prescriptions.

Big Pharma Spends More on Lobbying Than Anyone
lobbyistsSince 1998, the industry spent more than $5 billion on lobbying in Washington, according to the Center for Responsive Politics. To put that in context, that’s more than the $1.53 billion spent by the defense industry and more than the $1.3 billion forked out by Big Oil.

From 1998 to 2013, Big Pharma spent nearly $2.7 billion on lobbying expenses — more than any other industry and 42 percent more than the second highest paying industry: insurance. And since 1990, individuals, lobbyists and political action committees affiliated with the industry have doled out $150 million in campaign contributions.

Now here’s how it works for you and me. In the U.S. insurers only accept the price set by the drug makers. If the drug is exclusive, meaning there is no competing medication from other companies. Insurers then cover the total cost by forcing a higher co-pay on patients. Unlike Medicare, insurers have bargaining power when there are competing drugs and therefore can reduce the co-pays.

generic drugs1Then, there is the Generic drug market, those are drugs in which the patent has run out and other manufacturers are allowed to produce the product. As an example the antidepressant Remeron is also known by its generic name Mirtazapine. Remeron is the brand name given it by the original manufacturer, but Mirtazapine can be made and distributed by any pharma company and sold for a much lower price.

Competition in that area is fierce and generic drug prices are usually low. Today generics account for about 85 percent of drugs dispensed in the U.S.

Despite generics and their low prices, there are still many Americans who daily make the choice between food or drugs, between paying the rent and drugs or giving up some other type of health care in order to afford the drugs that keep them going. Many Americans don’t take their recommended prescriptions because they can’t afford them. One recent survey showed that about one in five U.S. adults did not fill their prescription or skipped doses due to cost as opposed to Australia and some other countries where the ratio is one in ten. http://tinyurl.com/pejvoyn

Some people have turned to foreign sources for their prescriptions and advairthere are many with some of the more popular ones thriving in Canada. Here’s an example of the savings that can be had. If you want a three month supply of the popular asthma inhaler Advair it will likely cost you somewhere in the neighborhood of $600 to purchase it from one of your local pharmacies. If you select one of the Canadian pharmacies you can import the same three month supply of the same medication, Advair, for about $150, with shipping included. That amount may not mean much to the Donald Trump tax bracket, but to average Americans it’s a whole lot of money. Advair is just the tip of the iceberg. ABC news reports the following price comparisons:

  • Mirapex, for Parkinson’s disease: $157 in Canada vs. $263 in the United States.
  • Celexa, for depression: $149 in Canada vs. $253 in the United States.
  • Diovan, for high blood pressure: $149 in Canada vs. $253 in the United States.
  • Oxazepam, for insomnia: $13 in Canada vs. $70 in the United States.
  • Seroquel, for insomnia: $33 in Canada vs. $124 in the United States.

Tufts University in Boston released a study in the year 2000 that placed the cost of approval for a single drug at $802 million, and that was fifteen years ago. To be fair it must be revealed that the dollar amount adds in each successful drug’s prorated share of failures (only one out of fifty drugs eventually reaches the market), but that still does not explain why the retail price is higher here than anywhere else.

The only logical explanation I can come up after some a fair amount of research is that pharmaceutical companies can get away with much higher prices in the U.S. and they can’t elsewhere. Period!

So what are your options, what can average patients who have difficulty Optionaffording some drugs do to stay healthy and be able to eat and pay their rent and other bills at the same time?

Well, there are several steps you can take. Among them are:

  • Contact state and federal legislators and ask them to allow Medicare to negotiate the price of prescription drugs
  • Also ask them to allow importing of essential drugs from foreign companies through approved pharmacies.
  • Ask big pharma companies to see if you qualify for their reduced prices for people who have trouble affording them.
  • Read the Consumers Report story on the issue. It will give you the information you need to identify trustworthy pharmacies. http://tinyurl.com/qbflucm

But, if you are like me you want even more detail. Ok. Here’s the best I can do.

You can shop for the best price and because of the internet that’s become a whole lot easier. You can look up a specific drug and find the best price at a pharmacy near you. Here are two resources. I’m sure you can find a lot more https://www.lowestmed.com/Search#/  orhttp://www.goodrx.com/ All you have to do is type in the drug you need and your zip code and it will find the price of that drug in pharmacies near you.

Transplant recipients might be interested in the cost of anti-rejection drugs. The price is hard to stomach but easy to find. In my zip code 32244 100 Mg Cyclosporine capsules range in price from $526.00 at Wall Mart to $584 at Target. If you are a heart patient and take Carvedilol in my neighborhood it ranges from $4.00 at Wal Mart to $9.54 at Kmart. Lisinopril also has a wide range. At the Publix Supermarket pharmacy near me it is FREE…that’s right FREE.  But at CVS it is $12.00.  Those price variations might make it worth a little longer drive to get a better bargain.

You can also get help with coupons which are an obvious choice to savecouponmoney when grocery or clothes shopping, but they’re often overlooked as a way to cut costs of over-the-counter and prescription drugs. Manufactures frequently offer one time and repeat coupons that can save consumers hundreds of dollars on their medicines. “For our family it has been incredibly effective [in saving money] for a number of regular prescriptions,” says Stephanie Nelson, founder of the coupon website CouponMom.com.

The costs of prescription drugs and over-the-counter medications have been steadily rising and patients facing tight budgets are often forced to make hard decisions when it comes to what they can afford.

The savings vary by manufacturer, but many companies offer discounts at each prescription refill while others offer discount cards that take $20 off co-pays. Others offer one-time coupons to cover the first use of a drug.

  • Consumer Reports Magazine says that there are other ways to save money, too. Whichever drugstore or pharmacy you use, choosing generics over brand-name drugs will save you money. Talk to your doctor, who may be able to prescribe lower-cost alternatives in the same class of drug. In addition, follow these CR tips.
  • Request the lowest price. Our analysis showed that shoppers didn’t always receive the lowest
    available price when they called the pharmacy. Sometimes they were given a discounted price, and other times they were quoted the list price. Be sure to explain—whether you have insurance or not—that you want the lowest possible price. Our shoppers found that student and senior discounts may also apply, but again, you have to ask.
  • Leave the city. Grocery-store pharmacies and independent drugstores sometimes charge higher prices in urban areas than in rural areas. For example, our shoppers found that for a 30-day supply of generic Actos, an independent pharmacy in the city of Raleigh, N.C., charged $203. A store in a rural area of the state sold it for $37.
  • Get a refill for 90 days, not 30 days. Most pharmacies offer discounts on a three-month supply.
  • Consider paying retail. At Costco, the drugstore websites, and a few independents, the retail prices were lower for certain drugs than many insurance copays.
  • Look for additional discounts. All chain and big-box drugstores offer discount generic-drug programs, with some selling hundreds of generic drugs for $4 a month or $10 for a three-month supply. Other programs require you to join to get the discount. (Restrictions apply and certain programs charge annual fees.)
  • Experts say that although the low costs could entice you to get your prescriptions filled at multiple pharmacies, research indicates that it’s best to use a single pharmacy. That keeps all of the drugs you take in one system, which can help you avoid dangerous drug interactions.”

Finally, what do you do if you’ve done the shopping, used coupons, followed all of the Consumer Report Tips and are still unable to pay for your prescriptions? Well, there is some limited assistance. Here are some resources.

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bob half of bob and jay photoBob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love. You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

 

How to Get the Most Bang for Your Prescription Medicine Buck


By Bob Aronson

cartoonI am a senior citizen, who has had a heart transplant and who also has Chronic Obstructive Pulmonary Disease (COPD).  I take a good number of prescription drugs and despite having Medicare Part D insurance I still pay thousands of dollars a year for my prescriptions.  Most of the drugs I take have been around for quite a while, but not long enough to allow the sale of generics and because there are few if any pricing restrictions, most of my meds are outrageously high priced.

One of the drugs I take is called Foradil.  It was approved by the FDA in February 2001 for the maintenance treatment of asthma and the prevention of bronchospasm in reversible obstructive airways disease..  Despite being on the market that long, it still retails for about $250.00 for a 30 day supply.  Spiriva is another COPD drug and is often taken with Foradil.  It retails for about $350.00.  I take about a dozen drugs and these two alone total over $600.00 a month. Insurance cuts that cost in half, but they are still expensive.  Because of these prices I know of many seniors and others who have to choose between eating and paying for their prescription meds.

It is an unfortunate fact of life that prescription drugs are more expensive in America than any other place in the world and as a result if you contract a serious illness like cancer you may not be able to afford the treatment that can save your life, even if you are insured.

It costs a whole lot of money to be sick in this country and a whole lot of people die — not because there iscartoon two no medicine or treatment but because they can’t afford to get well.  That strikes me as being just plain wrong.

Healthcare costs are skyrocketing, but prescription drugs lead the parade. Americans now spend a staggering $200 billion a year on them and the end is nowhere in sight.  The cost of staying alive is growing at the rate of about 12 percent a year.  It appears as though people are taking a lot more drugs than they used to and they are taking the really expensive new ones instead of older, cheaper drugs.  The reason?   Either physicians are pushing new medications too hard or, more likely, people are seeing the ads for new drugs in the media and are demanding them.  Strangely, unlike most other businesses where prices come down with time, that’s not true with drugs.  Price increases are commonplace even with the older ones and the increases aren’t one time adjustments. Often the price tag increases several times a year.

Earlier I pointed out that Americans pay more for their drugs than any other country in the world — but it isn’t just a little more…it’s a whole lot.  On average, the cost of prescription drugs in the U.S. is at least double what people in other countries pay for the same exact prescription and it some cases it is 10 times more.

A 2013 report from the International Federation of Health Plans, says Nexium, the pill commonly prescribed for acid reflux, costs U.S. patients more than $200, while Swiss citizens only pay $60 and people who live in the Netherlands pay $23. But Nexium is a drop in the bucket compared to cancer drugs. http://www.drugwatch.com/2014/10/15/americans-pay-higher-prces-prescription-drugs/

Not long ago CBS’ 60 Minutes devoted a segment to the absurdly high cost of cancer drugs. Correspondent Lesley Stahl reported that many cancer drugs cost well over $100,000 for a year’s worth of medicine. She said that in the fight against cancer, most people can expect to be on more than one drug. The bill for medications can escalate to nearly $300,000, a price tag that doesn’t include fees charged by a doctor or a   hospital. Health insurance companies – including government polices like Medicare – don’t cover the full cost of these drugs. Some policies don’t cover some of these drugs at all. cancerrBut cancer is not alone in the extreme price arena. Drugs for chronic diseases like multiple sclerosis also carry inflated prices. Prescriptions of Copaxone and Gilenya cost about $4,000 and $5,500, respectively and that amount is almost three times more than the most-expensive price in other countries.

In the case of almost every other product sold on the free market, the older a product gets the less it costs. In the case of cancer drugs in America, the inverse is actually true. Novartis developed Gleevec, one of the most popular cancer drugs, in 2001 and sold it for $28,000 a year. By 2012, its cost rose to $92,000. Despite not being a novel treatment, Novartis is allowed to hike up the price every year in the United States.

So If you are a reasonably intelligent person you will ask three questions.  1) Why do these drugs cost so much? 2) What is being done to bring the prices down? And 3) Is there help available to people who can’t afford the drugs that can keep them alive.

Let’s answer the questions one at a time.  First.  Why are drugs so expensive?  Well, if you listen to the bigbig pharma pharma companies they will tell you that the cost reflects their investment in research and development of the drugs.  They will tell you they spend millions on drugs that don’t pan out and that expense is passed on to the patient.  But are they telling the truth?  No they aren’t! Pharmaceutical companies are fond of saying Americans take the lion’s share of the R&D costs for the rest of the world – calling other countries “foreign free riders.” So, drug companies are forced to charge Americans more to recover what they don’t get from other countries.

In fact, the more disturbing truth is that companies charge what they want in the U.S., and it’s a profiteering paradise for them.  U.S. law protects these companies from free-market competition.  For example, Medicare is not allowed to negotiate prices. By law, it has to pay exactly what the drug companies charge for any drug.  In effect our lawmakers told the pharmaceutical companies that they can charge whatever they want and we (the taxpayers) will pay it. Even may insurance companies don’t negotiate or do it half-heartedly.  Companies make billions on most of these drugs, and they receive massive tax breaks for R&D, leading to inflated figures. Another huge portion of the costs are subsidized by taxpayers.

Here’s the sad part of all this R and D and the introduction of new drugs.  Only 1 in 10 of them actually provides substantial benefit over old drugs.  To add insult to injury the side effects of the new entries create the need for more drugs. And — some of these drugs have horrible complications that result in lawsuits to recover damages.

University of Medicine and Dentistry of New Jersey Health professor and policy expert Donald W. Light says, “We can find no evidence to support the widely believed claims from industry that lower prices in other industrialized countries do not allow companies to recover their R&D costs so they have to charge Americans more to make up the difference and pay for these ‘foreign free riders,’”

In contrast, governments in other countries put caps on the price of drugs and negotiate prices based on what the actual therapeutic benefit is. And Big Pharma still turns a healthy profit in other countries, despite costs being 40 percent lower than they are in the United States.

Big Pharma would have many Americans believe that it is disadvantaged by the costs of developing a new drug. The truth is, drug companies are far from impoverished. EvaluatePharma’s most recent report shows that 2013 was the biggest year since 2009 for drug approvals. These new drugs will add nearly $25 billion to Big Pharma’s coffers by 2018, and prescription drug sales will exceed one trillion dollars by 2020.

The health care industry as a whole has more than enough money, with billions left to continue pursuing its interests in Washington.

Big Pharma Spends More on Lobbying Than Anyone

campaign contributionsSince 1998, the industry spent more than $5 billion on lobbying in Washington, according to the Center for Responsive Politics. To put that in context, that’s more than the $1.53 billion spent by the defense industry and more than the $1.3 billion forked out by Big Oil.

From 1998 to 2013, Big Pharma spent nearly $2.7 billion on lobbying expenses — more than any other industry and 42 percent more than the second highest paying industry: insurance. And since 1990, individuals, lobbyists and political action committees affiliated with the industry have doled out $150 million in campaign contributions.

The world’s 11 largest drug companies made a net profit of $711.4 billion from 2003 to 2012. Six of these companies are headquartered in the United Sates: Johnson & Johnson, Pfizer, Abbot Laboratories, Merck, Bristol-Myers Squibb and Eli Lilly. In 2012 alone, the top 11 companies earned nearly $85 billion in net profits. According to IMS Health, a worldwide leader in health care research, the global market for pharmaceuticals is expected to top $1 trillion in sales by 2014.http://www.drugwatch.com/manufacturer/

But the large amount of cash Big Pharma bestows on government representatives and regulatory bodies is small when compared with the billions it spends each year on direct-to-consumer advertising. In 2012, theadvertising industry invested nearly $3.5 billion into marketing drugs on the Internet, TV, radio and other outlets. The United States is one of only two countries in the world whose governments allow prescription drugs to be advertised on TV (the other is New Zealand).

A single manufacturer, Boehringer Ingelheim, spent $464 million advertising its blood thinner Pradaxa in 2011. The following year, the drug passed the $1 billion sales mark. The money in this business appears to be well-spent.

No sane person can object to a company making a profit, it’s part of the American way, but the drug industry’s profits are excessive.  We paysignificantly more than any other country for the exact same drugs. Per capita drug spending in the U.S. is about 40 percent higher than Canada, 75 percent greater than in Japan and nearly triple the amount spent in Denmark.

So you might ask, “What can I do to get the lowest possible price for my  prescriptions?”  Well, there are a few things.  You can shop for the best price and because of the internet that’s become a whole lot easier.  You can look up a specific drug and find the best price at a pharmacy near you.  Here are two resources, I’m sure you can find a lot more https://www.lowestmed.com/Search#/  or http://www.goodrx.com/ All; you pharmacieshave to do is type in the drug you need and your zip code and it will find the price of that drug in pharmacies near you.

Transplant recipients might be interested in the cost of anti-rejection drugs.  The price is hard to stomach but easy to find.  In my zip code 32244 100 Mg Cyclosporine capsules range jn price from $526.00 at Wal Mart to $584 at Target.  If you are a heart pateint and take Carvedilol in my neighborhood it ranges from $4.00 at WalMart to $9.54 at Kmart . Lisinopril also has a wide range.  At the Publix Supermarket pharmacy near me it is FREE…that’s right FREE.  But at CVS it is $12.00.  Those price variations might make it worth a little longer drive to get a better bargain.

You can also get help with coupons which are an obvious choice to save money when grocery or clothes shopping, but they’re often overlooked as a way to cut costs of over-the-counter and prescription drugs.  Manufactures frequently offer one time and repeat coupons that can save consumers hundreds of dollars on their medicines.  “For our family it has been incredibly effective [in saving money] for a number of regular prescriptions,” says Stephanie Nelson, founder of the coupon website CouponMom.com.

The costs of prescription drugs and over-the-counter medications have been steadily rising and patients facing tight budgets are often forced to make hard decisions when it comes to what they can afford.

The savings vary by manufacturer, but according to Nelson, many companies offer discounts at each prescription refill while others offer discount cards that take $20 off co-pays. Others offer one-time coupons to cover the first use of a drug.

Consumer Reports Magazine says that there are other ways to save money, too.  Whichever drugstore or pharmacy you use, choosing generics over brand-name drugs will save you money. Talk to your doctor, who may be able to prescribe lower-cost alternatives in the same class of drug. In addition, follow these tips.

  1. Request the lowest price.Our analysis showed that shoppers didn’t always receive the lowest couponavailable price when they called the pharmacy. Sometimes they were given a discounted price, and other times they were quoted the list price. Be sure to explain—whether you have insurance or not—that you want the lowest possible price. Our shoppers found that student and senior discounts may also apply, but again, you have to ask.
  2. Leave the city.Grocery-store pharmacies and independent drugstores sometimes charge higher prices in urban areas than in rural areas. For example, our shoppers found that for a 30-day supply of generic Actos, an independent pharmacy in the city of Raleigh, N.C., charged $203. A store in a rural area of the state sold it for $37.
  3. Get a refill for 90 days, not 30 days.Most pharmacies offer discounts on a three-month supply.
  4. Consider paying retail.At Costco, the drugstore websites, and a few independents, the retail prices were lower for certain drugs than many insurance copays.
  5. Look for additional discounts.All chain and big-box drugstores offer discount generic-drug programs, with some selling hundreds of generic drugs for $4 a month or $10 for a three-month supply. Other programs require you to join to get the discount. (Restrictions apply and certain programs charge annual fees.)
  6. Consumer Reports goes on to say that “although the low costs we found at a few stores could entice you to get your prescriptions filled at multiple pharmacies based only on price, our medical consultants say it’s best to use a single pharmacy. That keeps all of the drugs you take in one system, which can help you avoid dangerous drug interactions.”

Finally, what do you do if you’ve done the shopping, used coupons, followed all of the Consumer Report Tips and are still unable to pay for your prescriptions.  Well, there is some limited assistance. Here are some resources.

  1. http://www.medicare.gov/pharmaceutical-assistance-program/

2.http://www2.nami.org/Content/ContentGroups/Helpline1/Prescription_Drug_Patient_Assistance_Programs.htm

  1. http://healthfinder.gov/rxdrug

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bob 2Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes.

THE PRICE WE PAY FOR THE HIGH COST OF ANTI-REJECTION DRUGS


dialysis scam cartoonIntroduction by Bob Aronson

Blog by James Myers

 James Myers lives in Indiana and is a member of Facebook’s Organ Transplant Initiative (OTI).  He suffers from End Stage Renal Disease (ESRD) or Kidney failure.  Jim is on dialysis and has been active locally and nationally in the effort to end the 36 month limit on Medicare coverage of anti-rejection drugs.  He is one of the 100,000 kidney patients on the national transplant wjames myersaiting list. Jim is a frequent thoughtful and valuable contributor to the discussions on OTI and we thank him profusely for writing the following blog. 

 

 

ARE DIALYSIS PATIENTS NOT SEEKING KIDNEY TRANSPLANTS BECAUSE ANTI-REJECTION DRUGS COST TOO MUCH?

 By James Myers

I guess the best place to start a blog about kidney disease is to explain what the kidneys do.  This graphic pretty much explains it.What do kidney's do graphic

Everyone is born with two kidneys, but we can survive with one if necessary.  Sometimes called “The Silent Epidemic” Kidney disease affects millions and threatens even more.   600,000 American citizens suffer from ESRD (End Stage Renal Disease) and kidney failure which leaves you with 3 choices: (1) dialysis; (2) a kidney transplant or (3) death. Kidney transplant recipients must take immunosuppressive drugs for the life of their transplant, or they risk losing their new organ. Medicare pays for the transplant and immunosuppressive drugs for 36

medicare logo 2months post-transplant unless beneficiary is Medicare-aged (65) or Medicare-disabled.   The Medicare (ESRD) program pays for dialysis or transplantation for over 600,000 kidney disease patients every year, regardless of age, and has saved millions of lives in the four decades since its enactment. After a transplant, recipients must take immunosuppressive drugs every day for the  rest of his or her life.   Failure to do so significantly increases the risk of organ rejection and therefore, death.   If you are covered by Medicare due to either age or disability and have a transplant your anti-rejection drugs are covered for life.kidney transplant  If you are not covered due to age or disability Medicare will still pay for your kidney transplant, but will only cover anti-rejection drugs for 36 months, then you are on your own.  this policy makes absolutely no sense because, ironically, Medicare will pay for a lifetime of dialysis which costs more and even more ironically, if you go into rejection because you can’t afford to buy the drugs that prevent it, Medicare will pay for another transplant and/or dialysis at costs that are many times that of the annual expense of immunosuppressant drugs.  This political slight of hand act not only wastes U.S. taxpayer dollars, it can actually cause death.

Here are some startling facts that make you wonder woman wired for carewhy congress refuses to make a common sense change.   When Medicare coverage ends after 36 months many transplant recipients have difficulty finding other coverage for their immunosuppressive drugs. Medicare spends around $90.000 per year for an individual who is on dialysis and $125,000 during the first year of a kidney transplant. However, after that first year the transplant patient’s drug costs plummet to $25,000 or a little over $2,000 a month.  Not many people have an easy time paying that bill but for the federal government it would be a cost saving measure to cover the drugs rather than pay for a new transplant or more dialysis.  Furthermore, extending mmunosuppressive  coverage beyond the 36-month post-transplant limit would improve outcomes and enable more kidney patients who lack adequate insurance to consider transplantation. Most transplant recipients also have a higher quality of life, and are more likely to return to work than dialysis patients, and if they return to work they again become taxpayers.

Currently, there is a bill pending in the U.S. senate (S. 323), “The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act,” would extend Medicare Part B coverage for kidney transplant recipients for the purpose of immunosuppressive drugs only. All other Medicare coverage would end 3U.s. senate6 months after the transplant. Beneficiaries would be responsible for the appropriate portion of the Part B premium, as well as applicable deductible and coinsurance requirements. For patients who have another form of health insurance, Medicare would be the secondary payer. The bill also requires that group health plans currently providing coverage of immunosuppressive drugs for kidney transplant recipients maintain this coverage.

There is a corresponding bill in the U.S. House of Representatives (H.R. 1428): Comprehensive Immunosuppressive Drug Coverage for Kidney pay for the good news cartoonTransplant Patients Act.   The Senate version of the bill has been passed out of committee.

Last week, I read a blog I found to be disturbing. Coupled with that, I received a note from one of my friends. The note and the blog indicated that people who were unable to age/disability qualify for Medicare were refusing transplants due to the high costs of the anti-rejection medications. According to Cameron Field and Kidney Buzz, of the 275,000 people who are on dialysis in the United States, only 93,000 chose to be listed on the US Kidney Transplant Waiting List. Two thirds of dialysis patients are not listed, while only one third had chosen to list.

Does the prospect of Medicare coverage for only 36 months and then the average monthly cost of approximately $2100/ month cause people to decline the transplant option? Of course, there may be others reasons to decline; it requires a surgery, the risk of infection, the risk of rejection even if you take the meds, the necessary follow up, and pain, but sources are now saying that it may be possible that up to 34% of dialysis patients are declining transplants due to the cost of anti-rejection meds.  They know they will die without the transplant but they have no choice.

The Dialysis Patient Citizens conducted a survey last year on this issue. 29% said they had other medical conditions. 26% said they were too old. 7% said they were overweight. 6% said their doctors didn’t recommend it. 5% said they were satisfied with dialysis. However, 6% cited financial reasons generally, 4% said they couldn’t afford the surgery, and 2.5% said they couldn’t afford the medications. 17% cited personal reasons. Who knows how many in that 17% didn’t want to disclose financial hardship. So according to the DPC’s data, between 13% and 30% aren’t on the list due to financial reasons.   Of the 13,000 transplants performed last year, 6,000 were from living donors, but there are some barriers to living donation that must be overcome, as well.

Nearly everyone knows that while we are born with two kidney’s we can live with just one, so many people choose to donate the second kidney tliving organ donorso a dying patient,.  While the recipients insurance pays the medical costs the donor is often left footing the bill for lost wages while hospitalized and travel to and from the transplant center.   Some states,but not all will provide reimbursement in the form of tax deductions, but nice as they are, they don’t put cash in the pocket of the donor.  The feds have a few grants available but they are grossly underfunded and so many have to foot the bill themselves.  That knowledge may prevent many from offering to be donors. The DPC estimates that cost to reimburse lost wages is about $6,000 for one surgery. When you look at in in terms of Medicare paying for the transplant surgery ($100,000) and for the cost of anti-rejection drugs ($24,000 a year), travel and lost wages for the donor would be a minimal expense and if available would likely increase the number of living donors.

So where do we stand?  If 30% of the people taking dialysis refuse to be listed due to the costs of transplant autoimmune medications, then we are talking about approximately 100,000 people who cannot afford a life-saving transplant.

Everyone on dialysis knows that life expectancy while on that machine is, on average, from 3-5 years. Life expectancy for a transplant, from a living donor is on average, 12 to 20 years, while a deceased donor kidney is somewhat less, 8 to 12 years. If you receive a kidney transplant before you are required to begin dialysis then you will live 10 to 15 years longer than if you stayed on dialysis.  So, even though a kidney transplant involves major surgery and requires some risk, in comparison it offers you a longer life.   Most patients who have been on dialysis before their transplant see an amazing difference in their quality of life.

There are two closely related issues here that can be resolved.by one simple action.  The Congress must pass and the President must sign the bill that would provide lifetime coverage of anti-rejection drugs.  It is the only logical, financially responsible and humane solution to a problem that has already caused untold misery and death.

If you find the current law absurd and a waste of money and want to see it changed to save lives and taxpayer dollars then you can help by writing to your congressional representative or U.S. Senator ttake actionoday.  The sample letter below can be used as a guide, but we encourage you to use your own words.

Sample language

Dear ­­­­­____; I am contacting you to request that you cosponsor important legislation for chronic kidney disease patients (for the house, refer to file H.R. 1428.  For the senate refer to file S 323), the “Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act to help kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new kidney.

Individuals with chronic kidney failure require kidney dialysis or a transplant to survive, and are eligible for Medicare regardless of age or other disability. There is no time limit on Medicare coverage for dialysis patients. However, transplant recipients who are not aged or disabled retain Medicare eligibility only for 36 months following their transplant. After their Medicare ends, they often face the challenge of obtaining group health insurance or other coverage, greatly increasing the risk of organ rejection if they cannot afford their required medications. If the transplanted kidney fails, they return to dialysis or receive another transplant, both of which are more costly (Medicare spends about $90,000 annually on a dialysis patient and about $25,000 per year for a kidney transplant recipient, after the year of the transplant).

The current bill would extend Medicare Part B eligibility, and only for immunosuppressive medications. Coverage for any other health needs would end 36 months after the transplant, as under current law. The legislation also requires group health plans to maintain coverage of immunosuppressive drugs if they presently include such a benefit in their coverage. Lifetime immunosuppressive coverage will improve long term transplant outcomes, enable more kidney patients who lack adequate insurance to consider transplantation, and reduce the number of kidney patients who require another transplant. Nobody should lose a transplant because they are not able to pay for the drugs to maintain it.

On behalf of thousands of transplant patients, I respectfully request your support of this legislation. Sincerely,

Your name

 

In order to help you write to your representative in congress Bob’s Newheart has provided the following resource.  You can find your elected representatives and others here http://www.usa.gov/Contact/Elected.shtml or you can use the following links as well

To find your U.S. Senator’s address click on this link http://www.senate.gov/general/contact_information/senators_cfm.cfm

To find your congressional representative click on this link. http://www.house.gov/representatives/find/

 

bob minus Jay full shotBob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Proposed Medicare Rule Would End Support of Anti-Rejection Drugs While We Pay More For Boondoggles


By Bob Aronson

UPDATE MARCH 10, 2014

Attention readers — Your outrage worked. Congratulations!!!!

The Obama administration said Monday that it would scrap much of a proposed plan to limit the types of antidepressants and other drugs that seniors can get through Medicare after a backlash from lawmakers and the health industry.

Original blog published February 28, 2014

This is one of the most important blogs I have published.  It is a direct appeal to you to take action.  You will find the steps you need to take at the end of this post.

here to help cartoonA government bureaucracy is seeking to change the rules that allow organ transplant recipients a broad choice of anti-rejection drugs.  If adopted it is the opinion of many medical experts that without the flexibility to select optional drugs many transplant recipients could die. 

Ask yourself, “How does it make sense to pay the cost of a transplant and then refuse to pay for the drugs that make it work? Would we train thousands of men and women to be soldiers and then send them into battle without weapons?”  It is quite likely that your answer would be, “Of course not! That would be insane.”

Unfortunately some bureaucrats are incapable of making decisions based on logic.  They waste billions of dollars and in the process hope we are fooled into thinking that wasted money represents good “investments.”  When these good “investments” go bad they don’t stop pouring money into them they cut expenditures elsewhere — and those cuts cause great harm to the citizens whose tax dollars pay their salaries.

This report is factual and intentionally biased. It is biased because I am a 75 year old heart transplant recipient who counts on Medicare to provide me with my anti-rejection drugs — drugs the government would like to take away so they can fund boondoggles.

Here is some perspective.  When you get a transplant, you must take anti-rejection or immunosuppressant drugs for the rest of your life.  Often, though, it is medically necessary to change to something different and more effective.  If the option for a life-saving change is taken away, many of us will die. 

How the rule makers can ignore that simple, medical fact is beyond me, but they also ignore reality when they say making these cuts will save $1.9 billion over several years.  Here’s reality.  If the changes are adopted they will not only endanger lives, they will in the end, result in taxpayers paying more, not less as the rule’s advocates suggest.   

Here’s how it works in real life.  If organ transplant patients don’t take their immunosuppressant drugs they will go into rejection and will be hospitalized at Medicare’s expense.

Physicians who are sworn to save lives will make every effort to do just that regardless of cost.  In the case of Kidney failure, rejection dialysiscould mean years of dialysis, a treatment that costs about $50,000 per patient per year (there are currently about 400,000 Americans on dialysis). In all cases it is entirely possible that patients who are rejecting their organs could be re-listed for second transplants. Depending on the organ, a transplant can cost in excess of $1 Million for the surgery and the first year of care.

It seems that the cost cutters think that by limiting options there is an almost immediate savings.  There isn’t.  There is, instead, an almost immediate rise in cost.  They seem to use the same twisted logic when trying to save money that they use when spending it.  You can read the detailed proposal here http://www.gpo.gov/fdsys/pkg/FR-2014-01-10/pdf/2013-31497.pdf

Some lawmakers insist that budget cuts be made and they are right, we spend too much as a nation but does it make sense to cut spending that will kill people?

There are two current military projects that are a very big part of the motivation behind the budget cuts.  They are the Gerald R. Ford aircraft carrier and the F-35 Joint Strike Fighter.  Together they have created cost overruns of nearly $200 Billion.  That’s right $200 Billion and the defense department wants more money even though the two projects are plagued with problems. 

These ghouls would actually take medicine from people who will die without it rather than cut dollars from bloated out-of-control projects that were never necessary anyway.

In 2005 the cost of the Gerald R. Ford was estimated to be about $8 billion, excluding the $4.7 billion spent on research Gerald r ford 3and development. Each year the estimate has gone up.  In 2013 a Government Accounting Office (GAO) report said that construction costs are now estimated at $12.8 billion.  That’s 22% over the 2008 budget, plus $4.7 billion in research and development costs.  Not only have the costs continued to rise above the original estimates the Navy is now asking for another $500 million and the aircraft carrier is nowhere near being ready for sea and is plagued with problems. If you would like to know more about the Ford and its problems this link will get you started.  http://www.freerepublic.com/focus/f-news/3110602/posts

F-35 3Then there is the F-35 Joint Strike Fighter.  According to Senator John McCain it is the most expensive weapons system in history and there’s no assurance it will ever do what it was designed to do.  Despite repeated disappointments and failures, we keep throwing good money after bad at it and now that project is $163 billion over budget, seven years behind schedule, and will cost taxpayers about twice as much as sending a man to the moon.  The cost of manufacturing the jets has increased a whopping 75 percent from its original estimate, and is now closing in on $400 billion. Over its lifetime, the F-35 program is expected to cost U.S. Taxpayers $1.5 trillion, between construction and maintenance of the jets.  http://www.pogo.org/blog/2013/03/20130306-air-forces-f-35a-not-ready-for-combat.html

If you would like more details on the F-35 this report provides them along with other links.
http://swampland.time.com/2013/12/18/how-not-to-buy-the-most-costly-weapon-system-in-the-history-of-the-world/

Instead of cutting out the fat in the national budget, though, the bureaucrats have decided to cut spending that very likely will result in death.  They would limit coverage of anti-rejection medicine that keeps organ transplant recipients alive.  Here’s a simple declarative sentence, “When you take away medicine that keeps people alive, they will die.” What part of that sentence don’t they understand? 

The American Kidney Fund is one ofakf logo two many organizations that takes exception to the proposed new rule.  Recently they sent out this letter to their members and other interested parties.

akf logo two

Dear____,

I’m writing to request your help with an issue that is of great importance to our nation’s transplant recipients.

Individuals who are fortunate enough to receive a kidney transplant—or a transplant of any other organ—must take immunosuppressive medications for the life of the transplanted organ to reduce the risk of losing the organ. Some patients rely on Medicare Part D to cover the cost of these medications.

Immunosuppressive drugs are one of six “protected classes” of drugs under Medicare Part D. This means that Medicare Part D must cover all approved immunosuppressive drugs, giving transplant recipients access to the full range of available medications.

On January 10, 2014, the Centers for Medicare & Medicaid Services (CMS) proposed a change to Medicare Part D that would revise the criteria for these protected classes of drugs. Part D plans would no longer be required to cover all approved immunosuppressive medications—instead, Part D plans would only be required to cover each subclass of immunosuppressive medications.

The American Kidney Fund believes that by not covering all of the specific drugs within each subclass, this rule would put patients’ health at risk. Transplant recipients often need adjustments to their immunosuppressive drug regimen. They require access to the full range of approved medications.

We are working hard to ensure that policymakers hear from the kidney community on this issue. You may click here to send a personalized letter to your Congressional representatives urging CMS to reverse this proposal. https://secure2.convio.net/akf/site/Advocacy?cmd=display&page=UserAction&id=119

Thank you for your participation in the American Kidney Fund’s Advocacy Network. Your voice makes a difference!

Sincerely,

Nikia Okoye

CMS (Centers for Medicare and Medicaid Services) will take public comment through March 7th. Please urge them to reject the draft rule change.  You can contact CMS with your comments in this manner. 

If you would like to comment directly to CMS you must do so before 5 PM on March 7, 2014.  Here’s how.

ADDRESSES

In commenting, please refer to file code CMS–4159–P. Because of  staff and resource limitations, we cannot accept comments by facsimile (FAX) transmission.  You may submit comments in one of

four ways (please choose only one of the ways listed):

1. Electronically.  You may submit electronic comments on this regulation to http://www.regulations.gov  or go directly to http://www.regulations.gov/#!documentDetail;D=CMS-2014-0007-0002 . Follow the ‘‘Submit a comment’’ instructions.

2. By regular mail.  You may mail written comments to the following address ONLY: Centers for Medicare & Medicaid Services, Department of Health and Human Services, Attention: CMS–4159–P, P.O. Box 8013, Baltimore, MD 21244–8013. Please allow sufficient time for mailed comments to be received before the close of the comment period.

3. By express or overnight mail.  You may send written comments to the following address ONLY: Centers for Medicare & Medicaid Services, Department of Health and Human Services, Attention: CMS–4159–P, Mail Stop C4–26–05, 7500 Security Boulevard, Baltimore, MD 21244–1850.

4. By hand or courier. Alternatively, you may deliver (by hand or courier) your written comments NLY to the following addresses prior to the close of the comment period: a. For delivery in Washington, DC—Centers for Medicare & Medicaid Services, Department of  Health and Human Services, Room 445– G, Hubert H. Humphrey Building, 200 Independence Avenue SW., Washington, DC 20201.

(Because access to the interior of the Hubert H. Humphrey Building is not readily available to persons without federal government identification, commenters are encouraged to leave their comments in the CMS drop slots located in the main lobby of the building. A stamp-in clock is available for persons wishing to retain a proof of filing by stamping in and retaining an

extra copy of the comments being filed.) b. For delivery in Baltimore, MD— Centers for Medicare & Medicaid Services, Department of Health and Human Services, 7500 Security Boulevard, Baltimore, MD 21244–1850.If you intend to deliver your comments to the Baltimore address, call telephone number (410) 786–9994 in advance to schedule your arrival with one of our staff members.

Comments erroneously mailed to the addresses indicated as appropriate for hand or courier delivery may be delayed and received after the comment period.

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magic kindom in backgroundBob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.

Kidney Disease — What You Need To Know


kidney cartoon 2

Blog by Bob Aronson

My last blog was about kidney disease and so is this one.  “Steering Toward Hope” told about Johnny Racine the Canadian father of 16 year old twin boys and how they turned their 2007 Ford Mustang into an 800 horsepower fire breathing showpiece named “The Kidney Hope Car.”  Racine, his boys and the rest of the “Steering” team will travel the width of Canada to promote organ donation and to raise money for kidney research.

This post will take a different but complimentary approach.  The law of supply and demand applies to human organs as it does to many other commodities.  While we must work harder than ever to increase the supply we must concurrently do everything we can to reduce the demand.  It is the only way we will ever arrive at anything even close to resembling a balance of the two. 

The following paragraphs will examine kidney disease from several angles — from listening to how patients describe their illness to prevention, treatment and what the future holds.

Before I get into the real life, real people part of this blog, let me first lay out the facts about Chronic Kidney Disease (CKD).  It is a major health problem that affects more than 26 million Americans.  It is the ninth-leading cause of death in the U.S.   While the numbers are different elsewhere every country is having the same experience.  Whether you are from Singapore, New Zealand, Canada or Peru you will find that kidney disease is on the rise and there are not enough organs for the number of people who need transplants.

Of the 26 million Americans with kidney disease, about half a million face kidney failure, the condition that requires dialysis. Dialysis, though, is not a cure and in many cases is a stop gap effort while the patient awaits an organ transplant — but transplants are hard to get. 

At this writing in November of 2013 there are almost 100,000 people on the list awaiting kidney transplants but 5-6,000 of them die while waiting because the supply of organs not only does not meet demand it is falling farther and farther behind.  Unlike other transplants though, one can also get a kidney from a living donor but there aren’t enough of them either in fact the number of living kidney donors has fallen steadily for the past several years, to 13,040 in 2012, despite the growing need.  Regardless of the source the average wait time for a Kidney Transplant in the U.S. is 1,121 days. 

I’m hoping this blog will help people understand two things. 1) how to prevent kidney disease and 2) what to expect if you get it.  But first, I think it is important to discuss what causes CKD.

Causes of Kidney Disease

The two main causes of chronic kidney disease are diabetes and high blood pressure, which are responsible for up to two-thirds of the cases. Diabetes happens when your blood sugar is too high, causing damage to many organs in your body, including the kidneys and heart, as well as blood vessels, nerves and eyes. High blood pressure, or hypertension, occurs when the pressure of your blood against the walls of your blood vessels increases. If uncontrolled, or poorly controlled, high blood pressure can be a leading cause of heart attacks, strokes and chronic kidney disease. Also, chronic kidney disease can cause high blood pressure.

Other conditions that affect the kidneys are:

  • Glomerulonephritis, a group of diseases that cause inflammation and damage to the kidney’s filtering units.
  •  Inherited diseases, such as polycystic kidney disease, which causes large cysts in the kidneys that damage the surrounding tissue
  • Repeated urinary infections.
  • Pregnancy problems. Sometimes a narrowing of the womb can occur that prevents normal outflow of urine causing it instead to flow back up to the kidney causing infections and kidney damage.
  •  Lupus and other immune system diseases
  • Obstructions caused by kidney stones, tumors or, in men, an enlarged prostate gland.

High risk groups include those with diabetes, hypertension and family history of kidney failure.  African Americans, Hispanics, Pacific Islanders, American Indians and senior citizens are at increased risk.

Before we get into the details of kidney disease and what to do if you have it, let us first discuss how to avoid it.  While there is no sure fire way to prevent kidney problems there are many very effective steps you can take because lifestyle can be a great contributor to the development of all diseases.

Avoiding Kidney Disease

national kidney foundation logoThe National Kidney Foundation has the following guidelines to reduce the risk of developing kidney disease:

  • Reduce sodium intake: Americans consume too much sodium (salt)
  • Limit red meat: Diets high in protein – especially those with animal protein – may harm the kidneys. Red meat is also high in saturated fat.
  • Avoid soda: Sugar-sweetened drinks, like sodas, are high in calories and contain no nutritious value. Additionally, colas have phosphorus additives which can damage kidneys.
  • Give up processed foods: Potato chips, crackers, cheese spreads, instant potato mix, and deli meats are all examples of processed foods that are high in phosphorus additives and sodium – both of which can have a damaging effect on the kidneys.
  • Reduce sugar intake: Consuming too much sugar can result in diabetes or obesity – both linked to kidney disease.
  • Sit less and stand more: Recent research has linked sitting for 8 hours or more a day with developing kidney disease.
  • Exercise and lose weight: Diabetes is responsible for 44 percent of all new cases of kidney failure. Obesity and Type 2 diabetes are on the rise and can often be treated and reversed.
  • Manage high blood pressure: Both considered silent killers, many people don’t realize high blood pressure and kidney disease are linked. Controlling blood pressure levels can prevent kidney damage and failure.
  • Avoid long term use of kidney-toxic drugs: Over-the-counter (OTC) pain medications, nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen brand names (Motrin, Advil, and Nuprin).
  • Get tested: Ask your doctor for an annual urine test to check for protein in the urine, one of the earliest signs of kidney disease, and a blood test for creatinine

But…there’s a whole lot more to preventing kidney disease.  The Correct Diet Can Help Avoid Kidney Disease  http://www.medicalnewstoday.com/articles/259203.php (See this link for the full story.)

Bad diet choices and habits like smoking and obesity are linked to ajkd logoan increased risk for kidney disease, suggests a new study published in the American Journal of Kidney Disease.

A group of investigators, led by Alex Chang, MD, of Johns Hopkins University, discovered that people with regular kidneys whose diet quality was bad – high in processed and red meats, sodium, and sugar-sweetened beverages, and low in fruit, nuts, legumes, whole grains, and low-fat dairy – were more likely to develop kidney disease.

Just one percent of people without unhealthy diet or lifestyle choices developed protein in their urine – an early sign of kidney damage. On the other hand, 13% of participants who had at least three unhealthy factors such as obesity, smoking, and poor diet developed protein in their urine.

Obese people, i.e. those with a body mass index (BMI) of at least 30, were twice as likely to develop kidney disease, the authors reported. A poor diet independently influenced risk for chronic kidney disease after adjusting for weight and other influential factors.

In total, those who ended up with kidney disease were more likely…

  • to be African American
  • to have high blood pressure
  • to have diabetes
  • to have a family history of kidney disease
  • have a higher intake of soft drinks, fast food, and red meat compared to those who did not have kidney disease.

How it Feels to Have Kidney Disease

Now let’s get to the disease itself. The medical profession can describe it in terms no one can understand but I prefer to hear from patients.  What does it feel like to have kidney disease, how does your body change?  That’s a tough question to answer because so many people have no symptoms or symptoms that are so mild they don’t notice them but we did find some clear, understandable and frightening explanations.

We are going to look at symptoms of kidney failure from two perspectives. First the little tell-tale signs that something might be amiss and secondly the more specific complaints as told by patients.  Fist the little signs that indicate you might have kidney disease but don’t diagnose yourself.  See your physician.  You might have kidney disease if you:

  • feel more tired and have less energy
  • have trouble concentrating
  • have a poor appetite
  • have trouble sleeping
  • have muscle cramping at night
  • have swollen feet and ankles
  • have puffiness around your eyes, especially in the morning
  • have dry, itchy skin
  • Need to urinate more often, especially at night

Now let’s look at more serious conditions. If you are feeling anything like any of the following people you probably should see your doctor as soon as possible.

  • “I feel like I have the flu and am cold most of the time and. When I take my temperature, it is normal. I feel sort of dizzy, have a loss of appetite, food doesn’t have any taste, I have shortness of breath, no energy, and am nauseous.  It’s pretty miserable.”
  • “When I first got sick I really thought it was a normal cold. I had a fever, was sneezing, runny nose etc. Then it got worse to where I was throwing up, had blood coming out in spits, vomit, urine, etc. Then it became really hard to breath and I couldn’t lay down anymore as it would cause me to suffocate. I ended up in the hospital where they told me both my kidneys failed and liquid was pushed up to my lungs which was causing me to suffocate. I don’t want to scare anyone but please learn from my mistake of not going to the hospital for about 3 weeks after I first got the cold like symptoms. Get a check up even if you think it is a cold!”
  • “My kidney failure was discovered by accident through routine blood work at the time of my yearly physical. The first red flag was a high potassium level on two different blood draws over a two month period of time. I had observed several symptoms too,  The first symptom strangely was an “itchy back,” another one was an “ill feeling” — not being very hungry – sweating — breathlessness — a rapid heart rate — and discomfort (pain) in the location of the left kidney. These “symptoms” did not appear all at once or I would have seen a doctor. I now know that all of these are symptoms of chronic kidney failure. It is vital to be informed and educated.” 
  •  “I was diagnosed about three years ago with stage 3 kidney failure. I had no signs that I was aware of as I also have congestive heart failure.  Now, I itch alll over my body, perspire excessively and have extreme pain in my back, neck,shoulders and legs, as well as increased ankle swelling.”
  • “I did not realize I had quit urinating until my husband and I went on a long road trip. I didn’t feel the need to stop to urinate at all. I paid no attention at the time but now I remember that I was very nauseous, vomiting, and had horrible leg cramps. On the third day I went to the ER and was admitted to the ICU. After five dialysis treatments I started to recover.   I now measure my output just to be sure.”

For the sake of education let’s assume you have been diagnosed with kidney disease. What are your options?  There really are only two.  1) you can choose to allow your medical team to treat it with medication and ultimately dialysis.  2) a kidney transplant but you must qualify and only a medical team at a transplant center can determine if you are a candidate for a transplant.

If Dialysis is Ordered

Chronic kidney disease continually gets worse and eventually leads to end-stage renal disease, also known as kidney failure.

\Your doctor might recommend you begin dialysis treatments once you reach the point where you have only 10 to 15 percent of kidney function left.

With kidney failure, the toxins and excess fluid that your kidneys should be releasing begin to build up in your body. People suffering from kidney failure begin dialysis to help their bodies remove these wastes, salts and fluid.

Two kinds of Dialysis

  1. Hemodialysis and
  2. Peritoneal dialysis.

Hemodialysis is typically performed at dialysis centers or hospitals but some clinics offer smaller devices for home use.

Hemodialysis, patients generally have an access point  in their arm to which the dialysis machine is connected.  On average It takes aobut four hours for the blood that is drawn from your body to be cleansed and returned.

Peritoneal dialysis is more likely to be done at home after you have a catheter placed in your stomach (a minor surgery).

There are two kinds of Peritoneal dialysis, 1) continuous ambulatory and 2) continuous cycling

Continuous cycling peritoneal dialysis is usually done at night. Before retiring you attach the dialysis machine tube to your catheter which pumps a solution into your stomach.  It stays there for a few hours so your stomach can act as a filter allowing waste and other fluids to pass through it into the solution.

Continuous ambulatory peritoneal dialysis is much different because you don’t need a  machine. You simply run dialysis solution into your abdomen through the catheter and after 4k to 6 hours drain it into a bag.  A physician can tell you how often during the day you need to do this

Risk Factors

There are several.  They include anemia, bone disease, high blood pressure and depression. Some patients on hemodialysis might have also have problems with low blood pressure.

Patients undergoing peritoneal dialysis are at risk of developing peritonitis which is an infection in the stomach lining. Your doctor will likely prescribe antibiotics to treat the problem.

 Got questions?  Many answers can be found here.

http://www.nwkidney.org/dialysis/startingOut/basic/faqs.html

 A Kidney Transplant

If it has been determined that a Kidney transplant is your only option this information may prove to be invaluable. 

KidneyBuzz.com encourages patients to stay as healthy as possible by managing stress, eating well, and staying active. It is important for patients to remain as well as possible during this time, so they are ready for kidney transplant surgery as soon as a donor organ becomes available. For patients who have a living organ donor, scheduling transplant surgery can take into account the health status of the recipient as well as other factors.

Manage your stress. Many patients constantly worry about their treatments, blood work results, future surgeries, etc. Education and support groups both online such as KidneyBuzz.com, and offline provide patients with tools and support to manage their stress and cope with the challenges associated with their condition. Recommended Reading: Will You be Ready when Your Time Comes for a Kidney Transplant? (this link and links below from KidneyBuzz)

There are other strategies that you can employ to expedite obtaining a Kidney Transplant including listing at more than one transplant center (Multi-Listing). Research has consistently shown that patients who are strategically Multiple Listed will greatly increase their chances of receiving a Kidney Transplant faster.   Nevertheless, only a mere 4.7% of individuals with CKD utilize the Multiple Listing technique.

KidneyBuzz Recommended Reading: “Ins-and -Outs” of Increasing your Chances of Getting a Kidney Faster

There are also website resources available that assist people with CKD to find Kidney Transplant Centers with the lowest average wait times that are the closest to where they live. These free user friendly website tools can be particularly helpful to people who are on a Kidney Transplant Waiting List in a high wait time area because it can significantly increase their access to  Kidney Transplant Centers options with far lower wait times. You can email KidneyBuzz.com at contact@kidneybuzz.com for more information and direct links to discussed sites.

Once you have determined the treatment track you will take the next logobig question most people have is, “How do I pay for the it?”  Well, if you have regular health insurance that might cover it.  If not the National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) http://kidney.niddk.nih.gov/kudiseases/pubs/financialhelp/ offer this information”

In 1972, Congress passed legislation making people of any age with permanent kidney failure eligible for Medicare, a program that helps people age 65 or older and people with disabilities pay for medical care, usually up to 80 percent. The remaining 20 percent can still pose a significant financial burden on patients. Fortunately, other public and private resources can help. Anyone with permanent kidney failure who does not have adequate insurance coverage should seek the help of a certified or licensed social worker. Every dialysis and transplant center has a social worker who can help people with kidney failure locate and apply for financial assistance. Social workers who specialize in helping kidney patients are called nephrology social workers.

Patients can also enlist the assistance of the State Health Insurance Assistance Program (SHIP). The SHIP is a national program that provides free counseling and assistance to Medicare beneficiaries on a wide range of Medicare and supplemental insurance matters. Patients can find a state program by visiting shipnpr.shiptalk.org/shipprofile.aspx click to view disclaimer page.

Medicarecms logo

To qualify for Medicare on the basis of kidney failure, a person must require regular dialysis or have had a Medicare-covered kidney transplant and must have paid into Social Security through an employer-or be the child or spouse of someone who has or have worked under the Railroad Retirement Board, or as a government employee-or be the child or spouse of someone who has or already be receiving Social Security, Railroad Retirement, or Office of Personnel Management benefits.

The Original Medicare Plan has two parts: Part A is hospital insurance, and Part B is medical insurance. Part B covers most outpatient services, including kidney dialysis, doctors’ services, outpatient hospital services, and many other health services and supplies. While Part A has no premiums, most Part B services require premiums, deductibles, and coinsurance.

Some people who are not eligible for Medicare because they have not worked at a job that pays into Social Security may still be eligible to buy Medicare coverage by paying premiums for Part A.

For more information check with the NKUDIC (link posted above)

935503_10201217871274032_357839664_nJay Robare is a friend and a member of my Facebook group Organ Transplant Initiative.  He is the talent behind the design of the OTI logo.  Jay is legally blind and has been on the kidney transplant list for about four years.  He wrote this about two years ago when he lived in Fort Lauderdale, Florida.  He is now a resident of Philadelphia, Pennsylvania.  Here’s Jay’s story….he’s still waiting.

The Jay Robare Story

Waiting for a Kidney

By the time that I was approved for Medicare, I had gone through all my savings and my limited insurance coverage. I had to quit working because my endurance was gone and because I was not working, I could not afford my apartment anymore and I had to start living with others that helped me out. I lost all my furniture and most of my art equipment.

I finally got disability insurance and was qualified for Medicare but not Medicaid since I was making too much money from disability; I got enough to pay rent and had some money for paper products, which costs a lot. I have to dry my hands on paper towels to stay sterile.

I was blessed with $200 in food stamps last year but that has been decreased too; I am out of food by the third week of the month. I keep asking for rides to the various food banks but people are too busy. I am not the only one going through this; most people just can’t understand the magnitude of what we are going through in our lives and in our bodies. I know everyone is having problems for I hear that all the time but when I got sick and started working to get on the waiting list, all my doctors and nurses treated me like I was given a special gift which it is…the gift of life but many people would rather worry about their financial or relationship problem that they will outlive. We won’t outlive our problems, they are literally killing us.

****Editors note.  (When Jay lived in fort Lauderdale he was on Peritoneal Dialyisis…he is no longer but I included it because patient should know about it.)

I didn’t even talk about having to do dialysis every night. The type of dialysis that I do is called Peritoneal Dialysis where I store 2,500 milliliters of sugar saline solution for 2 and a half hour cycles 4 times which is all carbohydrates. I have gained 30 Lbs and I look very well fed; my fried Dirk said I looked like I had a beer belly…my last beer was a Heineken last Christmas. One nice thing about PD instead of hemo dialysis is that I have no liquid restraints. On hemo, I could only have 60 Oz a day or I would risk cramping and THAT was a bitch. Cramps formed in muscles that I thought I never had and the pain was so bad it made me yell out for Jesus…made my tech laugh at me.

Speaking of techs, I had clowns that would not listen to me and do the treatment their own way ending up hurting me. For you on Hemo, THIS IS YOUR TREATMENT AND YOUR BODY, don’t take any crap from these people; make sure that your nurse knows and the director knows that you do not want this person touching you again. Another thing that I like about PD is that it is robbing my body of potassium and this lets me eat things that hemo would never let me eat like bananas, mashed potatoes, spinach, hummus, vegetables and fruits. I do have to take something called a binder every time that I eat something. This medicine absorbs all the phosphorus in the food. The binder can be nasty at times, it is very dry and tastes like I am eating chalk. The chalk does a good job but sometimes it is difficult to take. The meds are a chewable but I think they are coming out with a powder soon.

Another med that I have to take because of PD and a bad parathyroid, caused by ESKD is a drug called Zemplar and Sensipar. Both keep my calcium land my PTH levels down. The only problem is that Sensipar has made me nauseous for the last 4 years; I have been throwing up every time I took this drug for 7-8 months. I guess my body has had enough. The doctors, dietitians and I have been playing games for years. I have finally decided to have a perthyroidectomy. After this surgery, I will need to start taking calcium supplements, including eating more pizza and lasagna…LOL I

I get extremely tired sometimes during the day from either walking to the bus stop and going to Publix to get some noodles or walking from the bus stop to my Davita dialysis clinic to get labs done every Monday or Tuesday; I need to send a vile of blood to my transplant hospital every week so they can keep an eye on my health and changes in my DNA.

*** Editors Note (Jay is now living in Philadelphia and is on hemodialysis which limits his liquid intake.  He is desperately trying to find a living donor.  This journey has been very hard on Jay yet somehow he manages to keep his spirits up.

The Kidney Transplant

kidneysEveryone has two kidneys, each the size of a fist and they have a very important job to do. They filter waste and remove extra water from your blood to make urine.  But…there’s more.  Your kidneys also control your blood pressure and make hormones that your body needs to stay healthy. 

During a kidney transplant

Kidney transplants are performed with general anesthesia, so you’re not aware during the procedure. The surgical team monitors your heart rate, blood pressure and blood oxygen level throughout the procedure.

During the surgery:

  • The surgeon makes an incision and places the new kidnKidney transplantey in your lower abdomen. Unless your own kidneys are causing complications such as high blood pressure or infection, they are left in place.
  • The blood vessels of the new kidney are attached to blood vessels in the lower part of your abdomen, just above one of your legs.
  • The new kidney’s ureter — the tube that links the kidney to the bladder — is connected to your bladder.

Kidney transplant surgery usually lasts about three to four hours.

After a kidney transplant

After your kidney transplant, you can expect to:

  1. Spend several days to a week in the hospital. Doctors and nurses monitor your condition in the hospital’s transplant recovery area to watch for signs of complications. Your new kidney will make urine like your own kidneys did when they were healthy. Often this starts immediately. In other cases it takes several days. Expect soreness or pain around the incision site while you’re healing.
  2. Have frequent checkups as you continue recovering. After you leave the hospital, close monitoring is necessary for a few weeks. Your transplant team will develop a checkup schedule for you. During this time, if you live in another town, you may need to make arrangements to stay close to the transplant center.
  3. Take medications the rest of your life. You’ll take a number of medications after your kidney transplant. Drugs called immunosuppressants help keep your immune system from attacking your new kidney. Additional drugs help reduce the risk of other complications, such as infection, after your transplant.]

http://www.mayoclinic.org/kidney-transplant/kidney-transplant-procedure.html

The Future

What does the future hold?  It is easy to speculate about what the future holds and absolutely impossible to be accurate.  We just don’t know.  Is there promise? Yes! There are many promising developments taking place in laboratories around the world every day.  We won’t go in to all of them because if history is any indicator most of those experiments will fail.  There are some, though, that hold some promise at least for now…like this one.

Intravenous Kidney Cell Transplant Experiments Raise Hope for Future Human Kidney Failure Treatments

May 31, 2012 — Indiana University School of Medicine scientists have successfully transplanted primary kidney cells intravenously to treat renal failure in rats, pointing the way to a possible future alternative to kidney transplants and expensive dialysis treatments in humans.

The researchers, Katherine J. Kelly, M.D., associate professor of medicine, and Jesus Dominguez, M.D., professor of medicine, genetically modified the cells in the laboratory to produce a protein — called SAA — that plays an important role in renal cell growth, embryonic kidney development and kidney regeneration after an injury. Modified cells found their way to the appropriate locations of the damaged kidneys, resulting in regeneration of tissue and improved function in the kidney.

The researchers’ work has been accepted for publication in the American Journal of Physiology — Renal Physiology, which published an advance online version of the paper on May 16.  You can read more here http://www.sciencedaily.com/releases/2012/05/120531135645.htm

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Bob_Aronson at Mayo Jax tight shot 2008-01-30DJH--02Bob Aronson is a heart transplant recipient.  He got his new heart on August 21,2007 at the Mayo Clinic in Jacksonville, Florida where he now lives with wife Robin and their two dogs Reilly, a soft coated Wheaten, and Ziggy a Mini Schnauzer.

For some 25 years before his transplant Bob was an international communications consultant and owner of the Aronson Partnership which became the  Aronson Communications Group after the surgery.  Today he is semi retired and also assists his artist wife Robin with her Jinglers Jewelry art show business.

Prior to starting his consulting firm in the 1980s he served as the Communications Director for a Minnesota Governor;  was the first Anchor of Morning Edition on the Minnesota Public Radio Network; worked as a journalist at several Midwest broadcast facilities and from 1965 to 1974 was one of the first radio talk show hosts in the country.   

Aronson founded Bob’s Newheart and Facebook’s Organ Transplant Initiative (OTI) on November 3, 2007.  OTI is a 3,000 member transplant patient, recipient, caregiver and donor/donor family support and education group. 

Readers are welcome to Join OTI with the only requirement being that you support our mission which can be found in the “About” section of OTI.  We seek to grow our membership because by so doing will have more influence with decision makers as we pursue those issues which would most benefit our members.

Please view our music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

Thank you for reading our Bob’s Newheart blogs and please leave a comment or contact Bob directly at bob@baronson.org.  We intend to continue to expand the number of issues we cover and the availability of information to the public.  You’ll find scores of other posts on Bob’s Newheart, just check the index for topics, click and read.

If you are an organ donor we thank you.  If not you can become one by going to www.donatelife.net it only takes a few minutes.  Then, tell your family what you have done so there is no confusion later.

 

How to Choose a Health Plan Under the Affordable Care Act (ACA-Obamacare)


cant afford that dianosisBy

Bob Aronson

While the Affordable Health Care Act got off to a very rocky start due to massive computer glitches there’s plenty of time for consumers to do research to find the best plan.

The problem faced by most people is trying to make sense of all the legal gobbledegoop.  How do you sort it all out so that you know which health insurance plan to choose?  Well, we think we have some answers for you but it is still going to take some work on your part.

Before we get into any advice here’s the link for information for the Affordable Care Act. It is where you will ultimately determine what kind of coverage you should have and from which company. https://www.healthcare.gov/

The first-ever open enrollment period for individual and family health insurance plans under the Affordable Care Act (ACA) began October 1 and ends March 31, 2014. Open enrollment periods in following years will be shorter than this one-time six-month period.

According to HealthCare.gov the law offers you these rights and protections.

If you have questions you can call 1-800-318-2596, 24 hours a day, 7 days a week. (TTY: 1-855-889-4325).  Judging from the initial experience, however, you can probably expect long wait times and delays.

There are lots of questions so to  help you make your way through the insurance maze.  We relied on several sources for our information among them are:

1)  Consumer reports magazine ( their report is here http://tinyurl.com/odmjmq2

2) The Health Insurance Resource Center http://tinyurl.com/n38asm6   and

3) Forbes Magazine http://tinyurl.com/mrce8lg

4. Politifact http://tinyurl.com/m5pbarx

5. U.S. Dept of labor http://www.dol.gov/ebsa/healthreform/

6. Henry J. Kaiser Family Foundation http://kff.org/health-reform/faq/health-reform-frequently-asked-questions/

7. eHealth https://www.ehealthinsurance.com/affordable-care-act/faqs

8. National Public Radio (NPR) http://www.npr.org/2013/10/11/231101137/faq-what-retirees-and-seniors-need-to-know-about-the-affordable-care-act

Each one of the preceding links is worth reading.  Your health and your financial stability may be on the line so this is absolutely necessary homework.

Health Coverage for Seniors

We’re going to offer information for everyone in this post but I’m going to start with Senior citizens.

The first thing seniors need to know is this. Medicare is not part of the  health insurance exchanges. The exchanges won’t be selling so-called “Medigap” policies that supplement the coverage seniors get through Medicare.

Seniors will still get health coverage through Medicms logocare’s traditional fee-for-service program or Medicare Advantage plans.  Beneficiaries receive more preventive care, including a yearly “wellness” visit, mammograms, colorectal screening, and more savings on prescription drug coverage.  By 2020, the law will close the coverage gap which is also known as the “Donut Hole but  Seniors will still be responsible for 25 percent of their prescription drug costs.

Medigap Coverage

Seniors will still get health coverage through Medicare’s traditional fee-for-service program or Medicare Advantage plans, private health insurance plans that are approved by Medicare. Those who are enrolled in , which covers hospital care, or the Advantage plans will meet the health law’s .

Seniors were pretty much left out of consideration when ACA passed.  They get some benefits like the closing of the donut hole and health screening.  A glaring omission is that while pre-existing conditions cannot be considered for others, they are still a factor for seniors.  Medigap is not bound by that provision of the law.  Medicare is but not the Medigap supplemental policies.   But….and this is a very important But:

The most critical time for Senior Citizens is the six months after you first enroll in Medicare Part B. During that period, you can buy any Medigap policy you want, and the insurer can’t turn you down or charge you more than anyone else your age even if you have pre-existing conditions.

According to Consumer Reports Magazine (CR) you also have the same rights if you have a retiree or union plan that fills in Medicare’s coverage gaps but it ceases operation, or if your Medicare Advantage plan closes up shop or you move out of its coverage area. Read more about the difference between Medigap and Medicare Advantage.

CR goes on to say that Senior Citizens may be stuck with what they have.  “Although it never hurts to shop around. “Medigap plans are generally more permissive about underwriting than health plans sold to younger people,” said Bonnie Burns, a Medicare expert with California Health Advocates, a nonprofit consumer group. “Some are more strict than others.”

Medicare Advantage

Another issue of importance to Seniors is Medicare Advantage.   A Medicare Advantage Plan is a type of Medicare health plan offered by a private company that contracts with Medicare to provide you with all your Part A and Part B benefits. Medicare Advantage Plans include Health Maintenance Organizations, Preferred Provider Organizations, Private Fee-for-Service Plans, Special Needs Plans, and Medicare Medical Savings Account Plans. If you’re enrolled in a Medicare Advantage Plan, Medicare services are covered through the plan and aren’t paid for under Original Medicare.

There has been a lot of publicity about cuts to Advantage and a lot of seniors are worried so let’s address that issue.  According to Politifact, an on line, Pulitzer Prize winning organization that checks the accuracy of political stories Advantage is growing in size not getting smaller.  Here’s what they say:

“Today, around 14.4 million seniors and disabled people — that’s 28 percent of all Medicare beneficiaries — are in Medicare Advantage, the most ever.

Advantage plans are required to offer basic health benefits that are at least as rich as original Medicare. But many offer extras, such as rebates on premiums, routine dental care, gym memberships and rides to the doctor, in order to compete for business.

Medicare Advantage members pay premiums just like people who get their benefits through original Medicare.  The private companies turn a profit depending in part on how well they manage costs of care. Sweetening the deal: The government spends more per person — 7 percent more last year for Advantage beneficiaries compared with those in original Medicare, estimated the Medicare Payment Advisory Commission.

The Affordable Care Act aims to gradually bring costs of the two programs in line. At the same time, it seeks to reward private insurers that offer the best care — these are the plans that top the new star rating system.   You might think shrinking payments for Medicare Advantage would mean fewer enrollees, but that hasn’t happened. Since passage of the Affordable Care Act in 2010, enrollment in Medicare Advantage plans has grown by 30 percent.”

The Politifact analysis continues with this:

politifact“After the health law passed in 2010, several government and private analysts predicted Advantage enrollment would decline. More recently, the Congressional Budget Office projected slow growth through 2022, while the CMS Office of the Actuary expects a decline between 2015 and 2018, then an increase.

It’s similarly tough to predict what will happen with costs and benefits, though it’s important to note that Advantage plans can never offer skimpier coverage than original Medicare. Government payments may go down, but they’re only one of the many factors that go into how insurers determine their offerings.

“The payment formula to Medicare Advantage is complex,’’ said Dan Mendelson, CEO of strategic analysis firm Avalere Health. “Honestly, to say that as a result of Obamacare there would be a reduction to Medicare Advantage would be misleading at best, because there are a lot of other things that come into play.’’

“We don’t know what’s going to happen, but that’s true every year,’’ said Joe Baker, president of the Medicare Rights Center, the national nonprofit advocacy group that fields around 12,000 calls a year to its consumer help line.

Still, Baker and others doubt seniors will find a September surprise in their mailboxes.
“If the last few years under the (health law) and this administration is any indication, it’s going to be a pretty smooth year and a pretty even year,’’ Baker said.

Mendelson, too, is dubious of a rate spike.

“In all likelihood, rates are going to be stable, and they’re going to be workable,’’ he said.

Medicaid

Medicaid presented a special difficulty in our effort to offer assistance  to those who need this service.  A U.S. Supreme Court decision left the decision about whether to participate in the Medicaid program under ACA up to the individual states and not all states chose to do so.  While we can offer this link that will help  you gain some understanding of your options, we likely will supplement this blog in a few days with a more detailed report.  http://www.apha.org/advocacy/Health+Reform/ACAbasics/medicaid.htm

Health Care Coverage for Everyone Else

The Exchanges

Plans offered will be in standardized “metal tiers” with various combinations of premiums and cost-sharing.  There are four distinct kinds of plans:

  • Bronze plans will pay 60 percent of the bill and cost the least
  • Silver plans will pay 70 percent.
  • Gold plans will pay 80 percent.
  • Platinum plans will pay 90 percent and cost the most.

Keep in mind that as the percentage of coverage increases so does the premium you pay — but it also means that you will pay less when you get the hospital bill.

Before you consider any plan you should begin by answering these four critical questions so you can make the best possible decision when you finally select a health insurance plan.   The questions are:

1. What does health care cost in your area?

2. How much have you budgeted for health care or, what can you afford?

3. What do you want from your coverage?  Do you have any special medical needs?

4. Does the plan cover the physicians and hospitals you prefer?

As I began my research for this blog I discovered almost immediately that finding the right health insurance coverage is not easy by any means.  It’s going to take some research and diligence on your part if you want the most bang for your buck.

So let us start with the first question.  What does health care cost in your area? Let’s make this as simple as possible.  The really important question is not what they charge but what do you have to pay?  Even that can get complicated because no plan pays a hundred percent and that means you pay something.  If the bill is a thousand dollars and your plan pays ninety percent then your share is one hundred dollars but if the bill is two thousand dollars and you plan still pays ninety percent you pay one hundred eighty dollars.  The ninety percent payment only becomes meaningful when you know the cost of the service or procedure.

Determining what a health care facility will charge you is not easy but we’ll try to help.  The problem is health care costs vary so greatly.   Here are some examples.

The Washington Post did an in-depth analysis of medical pricing in May of 2013 and found what to me is a shocking disparity between hospitals.  For exwashington postample:

Virginia’s highest average rate for a lower limb replacement was at CJW Medical Center in Richmond, more than $117,000, compared with Winchester Medical Center charging $25,600 per procedure. CJW charged more than $38,000 for esophagitis and gastrointestinal conditions, while Carilion Tazewell Community Hospital averaged $8,100 in those cases.”  The entire Washington Post article can be found here http://tinyurl.com/d3xm3g6

We advise you to read the Post report but thought we would include one more relevant piece of information from it.

“In our analysis of the 10 most common medical procedures we found certain patterns by state. Hospitals in six states — California, Florida, Nevada, New Jersey, Pennsylvania and Texas — routinely had higher prices than the rest of the country.

For-profit hospitals tended to bill Medicare at a 29 percent higher rate, on average, than nonprofit or government-owned hospitals.

Is this confusing?  You bet it is because hospitals and insurance companies play games with each other.  The prices and reimbursements they toss around make sense only to them and relate only to situations in which patients are either covered by insurance or Medicare.”

So, as I said earlier,In the end what matters is what you pay, not what the hospitals charge or what either the government or the private insurers pay.

Deciphering Your Hospital Bill

When you get a hospital bill you must know what the codes mean or the bill is meaningless.  You need to be able to do some comparisons between faclities so we found the resources listed and outlined below. I have included information provided by the Centers for Medicare and Medicaid Services (CMS) the government agency that runs Medicare because they keep track of pricing for everyone, not just seniors.  Be aware, though, that even this attempt at clarification can be confusing and that’s because health care is confusing.

Here’s the link to CMS it is very complete http://tinyurl.com/blv4cwg

Here’s another helpful site but….in order to look up a price you will need the CPT code.  http://www.fairhealthconsumer.org/medicalcostlookup/.  Of course you probably don’t know what a CPT code is, right?  Ok — CPT codes (Current Procedural Terminology) are found and used to identify procedures for which you will be charged. A CPT code is a five digit alphanumeric code with no decimal marks. When you receive a bill from your doctor before or after it has been sent to the payer (insurance or Medicare), it will have a list of services. Next to each service will be a 5-digit code. That’s the CPT code.

The American Medical Association (AMA) has every code there is — but you can’t have them all unless you are a physician member who haama logos paid a great deal for them. AMA has the copyright on CPT codes and guards it like it is a nuclear weapons cache.  They will give out one code at a time but they want you to suffer a little so its not easy.  Here’s how to do your AMA CPT code look-up:

  • Step 1: Link to the AMA website
  • Step 2: You’ll find an End-Use License. In essence it tells you that you may look up these codes only for your personal information and that you cannot sell them to anyone else. Further, it tells you that if they think you are using the system too much, they may limit your searches and/or limit the number of CPT codes you look up at one time. There is additional legaleese which you should probably read. You can also print the agreement.
  • Step 3: Click on ACCEPT or DECLINE. If you click on DECLINE, you will not be allowed access to the code lookup.
  • Step 4: The next page is your search page. Choose your state and city. If your city isn’t there, there will be a choice that makes sense. For example, if you live in Tampa, Florida, you’ll find that Tampa isn’t listed (only Miami and Ft. Lauderdale are listed) but there is a designation for “Rest of Florida.”
  • Step 5: If you already have the CPT code and want to see what it means: Simply input the 5-digit CPT code to the field, hit SUBMIT, and you’ll get your result on the next page. Included will be the RVU – see below.
  • Step 6: If you do not have the CPT code, but you know what the procedure or service was, you can do a search to try to figure out the right code. This can get tricky, though.

CMS uses CPT codes, too, but they are called HCPCS codes (why does government always have to change the name of commonly used terms?) and unlike AMA the codes are readily available and free but still take some work to ferret them out.  Here’s a link. http://patients.about.com/od/medicalcodes/a/Look-Up-Hcpcs-Codes.htm

Finally you can try these links for prices of common procedures.

Quality of Care

One of the great mysteries in all of this is that while the government and others have done extensive studies on medical procedure costs in nearly every city and every facility the costs quoted bear no relationship to the quality of care and the outcomes of the procedures. That’s another story completely.  Major medical centers, especially the teaching centers seem to charge a lot more than other facilities.  Many believe that the more something costs the better it is.  That’s not ever true with anything and particularly with health care.  You just can’t judge the quality of care by the price that is charged for it.

The famed Cleveland Clinic suggests you ask these questions.cleveland clinic

  • Is the hospital accredited by the Joint Commission?
  • Is the hospital rated highly by state or consumer groups?
  • Does the hospital have experience and success with your condition?
  • Is the hospital one where your doctor has privileges?
  • Is the hospital covered by your health plan?
  • Does the hospital review and continuously improve its own quality of care?

Finding the best quality care can be another daunting task and that’s entirely up to you.  This site may give you some help as you begin your search. http://www.ahrq.gov/legacy/consumer/guidetoq/guidetoq8.htm

OK.  Once you have determined costs in your area and the facility that offers the quality of care that you desire you now have three very important questions to answer before you make a decision on a health insurance policy.

  1. How much have you budgeted for health care or, what can you afford?
  2. What do you want from your coverage?  Do you have any special medical needs?
  3. Are the physicians and hospitals you prefer included in the plan.

I’m not even going to attempt to help you with any of those questions because only you have the answers.  The  information I provided earlier, though, should help.

Consumer Reports says:consumer reports logo

“Before health reform, companies could sell plansthat didn’t cover all types of medical care. For example, some might not cover doctor visits, or prescription drugs, or maternity care.

That was bad for consumers because no one can predict what kind of medical care they might need in the future. The only way to protect yourself financially is to have health insurance that covers every kind of health care.

The new health care law has fixed this problem.

Insurance sold to individuals and small businesses must now cover 10 “essential health benefits.”

  • Emergency services
  • Hospitalization
  • Laboratory tests
  • Maternity and newborn care
  • Mental health and substance-abuse treatment
  • Outpatient care (doctors and other services you receive outside of a hospital)
  • Pediatric services including dental and vision care.
  • Prescription drugs
  • Preventive services (such as immunizations and mammograms) and management of chronic diseases such as diabetes
  • Rehabilitation services

The rules for insurance provided by large employers are a little different but most of them will cover the same set of benefits. To make sure, ask your employer for the Summary of Benefits and Coverage, a standard form that will state exactly what the plan covers and doesn’t cover.

Get health insurance rankings

In general, if you pay a higher premium upfront, you will pay less when you receive medical care, and vice versa.”

I strongly advise readers to click on and read the links at the top of this blog provided by Consumer Reports, the Health Insurance Resource Center,  Forbes Magazine and the others.  They are all credible resources.

If you want to know all the details of the Affordable Care Act and how they are implemented year by year click on this site. http://www.hhs.gov/healthcare/facts/timeline/timeline-text.html

And finally, I’m sure I’ve missed a great deal here and I’m just as sure some of you will have suggestions. They are welcome. Please leave them in the comment section below.


We hope you found this helpful.  Please let us know if you have questions or comments.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our new music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just email me bob@baronson.org and ask for a copy of “Life, Pass it on.“  This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. 

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Can’t Afford Your Meds? Here Are Some Resources


By Bob Aronson

We have a two-fold national disgrace here in America.  One is the high cost of prescription drugs and the other is that many people don’t take their medications because they can’t afford them and some have to choose between buying medication or food.

We hope that this blog helps you find the financial or other assistance you need to be able to take your meds, get well and also have food on the table.

While they no doubt have an axe to grind and a vested interest Insure.com http://tinyurl.com/cnchrm9 has its facts right.  Here’s what they say:

·         More than half (54 percent) of Americans say they currently take prescription medicines. According to a March 2008 report, “The Public on Prescription Drugs and Pharmaceutical Companies,” issued jointly by USA Today, the Kaiser Family Foundation and the Harvard School of Public Health, one in five Americans are currently taking four or more prescription drugs on a daily basis.

 ·       The report shows that a significant portion of those with prescriptions have difficulty affording them. Four in 10 adults (41 percent) say it is at least somewhat of a problem for their family to pay for prescription drugs they need, including 16 percent who say it is a serious problem. That leads to personal strategies for cutting back: Three in 10 (29 percent) say that they have not filled a prescription because of the cost in the last two years, and 23 percent say they have cut pills in half or skipped doses in order to make medication last longer.

Obviously there is a problem but it isn’t just one dreamed up by insurance companies to sell more policies, I hear similar stories every day on my Facebook group Organ Transplant Initiative (OTI).  Some people are not taking their meds and as a result their health is suffering.  That’s just not right. 

My last blog about the high cost of prescriptions includes one example of a drug for a rare disease that cost $250,000 a dose.  Cancer though is not a rare disease and some cancer drugs cost as much as $10,000 a dose.  Few can afford medicine that costs that much and most have no idea where to go for help. 

I wish I could report that you don’t have to go without your drugs because you can’t afford them.  Unfortunately, while there is help available, not everyone will get it but you’ve got to try.  I took the liberty of doing some research to find that help and even though I know there are resources I missed I’m hoping that those I have attached here will be of some help to someone.

If your doctor prescribes an expensive drug and you’re uninsured or can’t afford the co-pays, don’t despair. So-called patient-assistance programs, many of them run by pharmaceutical companies, are available to help you get the drugs you need.

Each patient-assistance program sets its own eligibility requirements. The income limits vary widely, from 100% of the federal poverty guidelines (which in 2009 stood at $22,050 for a family of four) to over 300% of the guidelines, according to Rich Sagall, MD, president of NeedyMeds, an online clearinghouse of information for people who cannot afford medicine.

Most patient-assistance programs require the applicant to be an American citizen or legal resident, and most are restricted to the uninsured. “Most programs help people with no insurance, but some will help the underinsured,” says Dr. Sagall. For instance, some companies will provide medications to patients who have reached the limit of their prescription insurance; others help people on Medicare Part D, the federal drug-subsidy program. In general, however, if you qualify for government-funded programs (such as Medicaid), you probably will not be eligible for most patient-assistance programs.

NeedyMeds is an excellent website and resource http://www.needymeds.org/ this site should be your first stop in a search for assistance.

Forbes magazine offers some great information on specific drugs. http://tinyurl.com/kmjxf5n

Forbes…when patients can’t afford medication http://www.forbes.com/sites/larryhusten/2011/08/12/guest-post-when-patients-cant-afford-a-medication/

Here’s a form you can fill out to get help with specific prescriptions. The RX connection….fill out the form http://therxconnection.com/

And…of course, there are always scams and the Federal trade commission is a good resource to make sure that the help you are offered is real.  http://tinyurl.com/lxwvfra

One more point and one more resource.  OTI is a donation/transplantation support group so we would be remiss if we didn’t offer you some resources specifically focused on just us. 

Financial Assistance for Living Donors and Transplant Recipients

The following organizations may be able to provide some financial or related assistance to transplant candidates, recipients, living donors and potential living donors.

 This list is provided as a guide only; individuals will need to contact these organizations to determine if help is available for their particular situation.  Donors and recipients should also ask their transplant center for assistance with financial issues.

 

Air Care Alliance

1515 East 71st Street, Suite 312

Tulsa, Oklahoma 74136

Office Phone and Help Line: (918) 745-0384

Toll Free Help Line

Number: (888) 260-9707

Email:

mail@aircareall.org

www.aircareall.org

 

The Air Care Alliance is a nationwide league of humanitarian flying organizations whose volunteer

pilots are dedicated to community service. Volunteer pilots perform public benefit flying for health care, patient transport, disaster relief, environmental support, and other missions of public service. Air Care Alliance listed groups may be able to provide free or low cost flights for medical evaluation and surgery for living donors and recipients. Please see the website for details.

 

American Kidney Fund

6110 Executive Blvd., Suite 1010

Rockville, MD 20852

Phone: (800) 638-8299

Email:

helpline@kidneyfund.org

www.akfinc.org

 

The American Kidney Fund provides limited grants to needy dialysis patients, kidney transplant recipients and living kidney donors to help cover the costs of health-related expenses, transportation and medication. They provide information and support for kidney donation and transplantation, as well as general education and information on kidney disease.

 

American Liver Foundation

75 Maiden Lane, Suite 603

New York, NY 10038-4810

Phone: (800) 465-4837,

(800) GOLIVER

Email:

webmail@liverfoundation.org

www.liverfoundation.org

 

The American Liver Foundation, a national voluntary health organization, has established a Transplant Fund to assist patients and families in fundraising efforts for liver transplantation. The Foundation acts as a trustee of funds raised on behalf of patients to help pay for medical care and associated transplantation expenses, which may include expenses related to a living liver donation.

 

American Organ Transplant Association

3335 Cartwright Road

Missouri City, TX 77459

Contact: Ellen Gordon Woodal

l, Executive Director

Phone: (281) 261-2682

Fax: (281) 499-2315

www.a-o-t-a.org

 

The American Organ Transplant Association is a private, non-profit group that provides free or reduced airfare and bus tickets to transplant recipients and their families. AOTA publishes a newsletter. Patients interested in AOTA’s services must be referred by their physician. The association also assists people with setting up trust funds and fund raising. No administrative fee is charged.

Angel Flight

American Medical Support Flight Team

P.O. Box 17467

Memphis, TN 38187-0467

1-877-858-7788 Toll Free

1-901-332-4034 Local

1-901-332-4036 Fax

www.angelflightamerica.org

 

Angel Flight provides free air transportation on private aircraft for needy people with healthcare problems and for healthcare agencies, organ procurement organizations, blood banks and tissue banks. No fees of any kind. Volunteers serving the public since 1983.

 

Children’s Organ Transplant Association

2501 COTA Drive

Bloomington, IN 47403

Phone: (800) 366-2682

Email:

cota@cota.org

www.cota.org

 

COTA is a national, non-profit agency that raises funds for individuals and families to assist with transplant, living donor, and related expenses. They work with some adults as well as children. All funds raised go to the individual; no administrative fees are collected.

 

Georgia Transplant Foundation

3125 Presidential Parkway

Suite 230

Atlanta, GA 30340

Phone: (770) 457-3796

Toll-Free: (866) 428-9411

Fax: (770) 457-7916

Contact them online at:

http://www.gatransplant.org/ContactUs.aspx

 

The mission of the Georgia Transplant Foundation is to help meet the needs of organ transplant candidates, living donors, recipients and their families by providing information and education regarding organ transplantation, granting financial assistance and being an advocate for sustaining and enriching lives every day. The Georgia Transplant Foundation supports the fundamental basis of altruism for living donation. The goal of the Living Donor Program is to provide assistance to living donors for financial hardships created as a result of their donation.  Either the living donor or the

transplant recipient must be a resident of Georgia. For more details, visit

http://www.gatransplant.org/FinancialAssistance/LivingDonor.aspx

 

.

National Living Donor Assistance Center (NLDAC)

2461 S. Clark St

reet, Suite 640

Arlington, VA 22202

Phone: 703.414.1600

Fax: 703.414.7874

Email:

NLDAC@livingdonorassistance.org

www.livingdonorassistance.org

 

If you know someone who is considering becoming a living organ donor (kidney, lung, liver) the National Living Donor Assistance Center (NLDAC) may be able to pay for up to $6,000 of the living donor’s (and his or her companion’s) travel and lodging expenses. The transplant center where the recipient is waiting will apply on the living donor’s behalf. Visit the NLDAC Web site at http://www.livingdonorassistance.org for more details and to read about general eligibility requirements and how the program works.

 

Help Hope Live

(formerly the National Transplant Assistance Fund )

150 N. Radnor Chester Rd.
Suite F-120
Radnor, PA 19087

Toll-free:

800.642.8399

Web:

http://www.helphopelive.org

Help Hope Live has over 20 years’ experience empowering people to raise money in their communities to cover uninsured medical expenses.

 

Nielsen Organ Transplant Foundation

580 W. 8th St.

Jacksonville, FL 32209

(904) 244-9823

Email:

nielsen@notf.org

www.notf.org

 

The Nielsen Organ Transplant Foundation provides financial assistance to pre- and post-transplant patients in the Northeast Florida area.

 

National Foundation for Transplants

1102 Brookfield Road

Suite 200

Memphis, TN 38119

Toll Free: (800) 489-3863

Local: (901) 684-1697

Fax: (901) 684-1128

E-mail:

info@transplants.org

www.transplants.org

 

The National Foundation for Transplants provides financial assistance & advocacy to transplant candidates and recipients with significant costs not covered by insurance.

 

Transplant Recipients International Organization, Inc.

2100 M Street, NW, #170-353

Washington, DC 20037-1233

Email:

info@trioweb.org

www.trioweb.org

 

The TRIO/United Airlines Travel Program Isa cooperative arrangement between TRIO and the United Airlines Charity Miles Program. It provides TRIO members and family members with cost-free air transportation when travel is transplant-related. Visit http://www.trioweb.org/resources/united.html for more information.

 

Bob’s Newheart encourages readers to comment on each of our blogs and to add resources that they find in their own searches. 

 

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our new music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

En Espanol

Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.

Por favor, consulte nuestro nuevo video musical “Dawn Anita The Gift of Life” en https://www.youtube.com/watch?v=eYFFJoHJwHs YouTube. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

 

 

 

 

 

Mobility Scooters A First Time User’s Observations


electric wheelchair

By Bob Aronson

I don’t want to beat this issue to death but being as I am now the owner of a mobility scooter I know a little something about them and offer the following observations to those who are considering a scooter or a wheelchair.

At the onset I want it known I absolutely love this scooter and can handle it relatively easily and very easily if Robin is with me to help.  Tzora-TITAN-Titan-Scooter

First, know this, Medicare will only pay 80% of the cost of a vehicle and only for use IN the home.  You must prove to Medicare via diagnosis by a medical professional that you are indeed disabled and unable to get around your home without such a vehicle.  If you want transportation outside the home, neither Medicare nor Medicaid will pay for it.

mobility scooterNow, to the scooter.  The first thing for you to consider is how you plan to use it.  If you plan extensive use in a variety of environments you are going to pay a hefty price.  If you only want something portable that you can throw in the trunk of your car and take into Wal Mart or the Mall the vehicles are much cheaper but they are slow, don’t go very far on a charge and won’t carry very much weight.

All mobility vehicles have the same problem — you have to get them to where you want to use them.  If you just drive out your front door to the corner store then you have no problem.  But, if you want to take it to a mall, on a cruise or on a nature tour you have to be able to transport it.  This is a major issue, do not discount  it.  Some scooters and wheelchairs fold up easily others take more work and still others don’t come apart at all and for them you’ll need to purchase a mechanism that either gets the device into your vehicle mechanically or transports it on a bumper style carrier.

My scooter, the Tzora Titan three wheeler retails for about $2,000.  It is listed as portable and made for heavier duty use.  While I can handle the “Portability” of this scooter many could not.  This scooter breaks down into five parts (the advertising says two).  You must remove the basket, two batteries and then pull a lever that separates the scooter into two parts.  two part diagramThe heaviest of the two is 50 pounds which may not sound like much but if you have COPD or a back problem like I do, it can be difficult.  Picking up 50 pounds is not a problem for me, I have the arm strength to do that but the exertion leaves me out of breath.  Then you have to pick up the other piece which is 49 pounds and the two batteries which are 21 pounds each.  For someone with back or breathing problems this can be problematic unless you travel with someone who can help you.SyntekExifImageTitle

Upon arriving at your destination, you have to pick it all up again and assemble it.  The ad says It’s easy with very little bending…not true!  You have to bend over completely, steady the front of the scooter with one hand and lift the back end of the scooter on to the front end making sure that the connection is secure.  On my first try it took several attempts to connect the two.  It does get easier with practice (I suppose you could kneel instead of bend but either way getting up isn’t easy).  Then you have to lift the batteries and position them behind the seat; place the basket rods in the holes behind the seat; raise the seat and tiller and you are ready to go.  For an able bodied person this is a piece of cake.  It really is as easy as the advertising says it is, unless you are disabled.  Obviously the people who wrote the ad are not disabled.

My scooter is a three wheeler which is very maneuverable but not as stable as the four wheel version.  Most of these vehicles have no brakes…that’s right, no brakes.  You stop by letting go of the throttle lever and the stop is sudden so you have to get used to easing up on the throttle rather than just letting go.

An often overlooked item is a ramp.ramp  If you keep your scooter in the house and want to take it out the front door, even if it is at ground level you may need a small ramp to keep from getting hung up on the threshold.  I would not buy any mobility vehicle that has less than 5 inches of clearance from the bottom of the scooter to the ground.

If you can afford it I strongly advise getting a scooter with a full lighting package…not so much so you can see where you are going but rather so you can be seen. rear end lightingScooters are very close to the ground and it pays to be lit up like a Christmas tree along with having one of those bicycle or scooter flags on the back.  I don’t recommend driving your scooter on the street but sometimes it is unavoidable….that means you should also have a rear view mirror and even a horn.  You need to be totally aware of your surroundings and you need to let your surroundings know you are there.

There’s a lot I could write about but let me finish this entry with a couple of other items.  First the scooter you select should be able to carry your weight plus a hundred pounds (I carry an extra battery, my meds, snacks, a drink and my cane…it all adds up).

And … remember this, no matter what the advertising says it is all dependent on a hundred qualifications.  For example, when they say your scooter will go 20 miles on a charge that means it will do that at a very slow speed, if you weigh only 150 pounds and carry nothing else with you.  The more weight, the faster you go the shorter the battery life.

That’s enough for now.  More as I gain experience as a user.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our new music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

En Espanol

Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.

Por favor, consulte nuestro nuevo video musical “Dawn Anita The Gift of Life” en https://www.youtube.com/watch?v=eYFFJoHJwHs YouTube. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

Mobility Chairs and Scooters, What You Need To Know


Mobility Scooters and Chairs…Buyer Beware

By Bob Aronson

We’ve all seen the commercials from “The Scooter Store” and other like them that leave the impression that almost anyone can get one of these vehicles free.  Well buyers should have factual information before making a decision.

First, there’s a huge difference between a scooter and a wheelchair and there’s a big difference between a powered and a manually operated chair and there’s an even bigger difference in the chairs and the manufacturers.  Selecting such a vehicle takes time and patience.  I know because I recently selected a scooter that my sister purchased for me.  It took several days of internet research to sort them all out.

Let’s start with those claims about getting Medicare to provide you with a Buck Rogers type chair that will take you anywhere safely and in style.  You can read the full report by clicking on this link but I’ll summarize it for you as well. http://tinyurl.com/7guvxx6

Medicare coverage for electric mobility scooters

Medicare Part B will cover most of the cost of electric mobility scooters, but only if your doctor determines that it is medically necessary. The scooter must also be used primarily for moving about your home and not as a “recreational” vehicle. You may have to pay up to 20 percent of the cost after meeting your Part B deductible.

Other requirements for Medicare coverage include:

·         Your evaluation must be with a doctor or other qualified health provider

·         The evaluation must be documented and say that you need a mobility aid for a medical condition (called a “Certificate of Medical Necessity)

·         You must present the order or prescription to the Medicare-approved electric scooter supplier before Medicare can be billed

·         You must be able to safely operate, and get on and get off of the scooter

·         You must have good vision

·         You must have a health condition that causes difficulty for you to move around in your home

Recent changes to Medicare coverage for mobility scooters

There have been several recent changes to Medicare coverage for “Durable Medical Equipment,” which includes medical supplies and electric mobility scooters. It’s important that you read and understand these changes.

Competitive bidding

In an effort to cut costs, Medicare began to implement what is called “competitive bidding” at the beginning of 2011. The program requires providers and suppliers of Durable Medical Equipment to submit competitive bids for their products in order to stay or become Medicare-approved. Under this new rule, you must use Medicare-approved suppliers, or Medicare will not pay for the item.

There’s a whole lot more  you should know about  Medicare coverage so if you decide to pursue that route, click on the link I provided.  It’s all there.  

If you choose to get an electric wheelchair and want Medicare to cover it,you will be pretty much restricted to what they will pay for.  Certainly there are some things to look for that are critical and first among them is whether your home is wheelchair accessible.  Wheelchair accessible refers to the capabilities of a building or structure to offer individuals that utilize a wheelchair or other mobility device, the ability to maneuver without interference.  Will the chair fit through doorways? Are there ramps instead of stairs? Are the rooms big enough for the chair to turn around in (bathrooms in particular) This video will give you some idea of what it takes to make some homes wheelchair “Friendly.”  http://tinyurl.com/o6eq4lh

If your residence is not accessible you have three choices.  1) you can remodel it to meet your needs.  2) you can move to a residence that  is accessible 3) you abandon the idea of using a wheelchair.  Should you choose to remodel your living quarters there may be some federal assistance available according to the Council for Disability Rights. http://www.disabilityrights.org/mod3.htm.

Should your home be accessible and should your physician prescribe a mobility vehicle for you there are several choices ranging from manually powered wheelchairs to power scooters but remember, they must be used in the home.  For details see this link http://www.medicare.gov/Pubs/pdf/11046.pdf

Fraud

Most doctors, health care providers, suppliers, and private companies who work with Medicare are honest. However, there are a few who aren’t. For example, some

suppliers of medical equipment try to cheat Medicare by offering expensive power

wheelchairs and scooters to people who don’t qualify for these items. Also, some

suppliers of medical equipment may call you without your permission, even though “cold calling” isn’t allowed. Medicare is trying harder than ever to find and prevent fraud and abuse by working more closely with health care providers, strengthening oversight, and reviewing claims data.

 

If you want to use a mobility vehicle outside of the home the expense is yours even though you have a legitimate disability powered vehicles are not covered by Medicare.

I have Chronic Obstructive Pulmonary Disease (COPD) simply put, my lungs don’t work very well and I run out of breath easily so that means I can’t walk very far without having to stop to rest.  Despite that and despite my pulmonologists certification that I have the disease I do not qualify for a mobility vehicle for use outside the home even though it would allow me to do things I  can’t normally do like take a walk with my wife (she walks I ride), walk the dogs, go ashore on a cruise or any of a number of things. 

The major difference between scooters and wheelchairs is where they can be used and turning radius.  Wheelchairs can turn on a dime, scooters cannot but scooters offer more flexibility like outdoor use, carrying capacity, clearance from the ground, speed, portability and some will even pull a small trailer. 

According to “Disabled World” here’s the difference between an electric wheelchair and a scooter. http://www.disabled-world.com/assistivedevices/mobility/scooters/scooters-vs-wheelchairs.php. electric wheelchair

An electric powered wheelchair for long-term use is a high-tech piece of equipment with a host of advanced features to vastly improve mobility.

An electric wheelchair usually has four to six wheels and is steered by a programmable joystick. Electric powered wheelchairs are highly maneuverable and can be used both indoors and on even terrain outside.

An electric wheelchair offers the widest array of seat movement options of any personal mobility vehicle. Many wheelchairs offer motorized stand, tilt, and recline functions which make them more comfortable to use for long periods of time. They also offer more support for people who have posture issues.

Powered wheelchairs are very heavy, which makes them durable and stabile, but which also makes them impossible to carry and limits their ability to be used with lifts. Powered wheelchairs generally do not fold, which means they cannot be easily transported in a standard car. Furthermore, their weight makes them too heavy for simple scooter lifts and trailers.

The tradeoff, however, is that electric wheelchairs offer four-point tie downs, which make them safer to use as a seat in a moving vehicle.

Electric power wheelchairs are the most expensive type of personal mobility vehicle; the models with advanced speed, power, and features rival or exceed automobiles for cost. Wheelchair prices can go up to around $15,000.

What Advantages and Disadvantages Does an Electric Medical Scooter Offer?

An electric mobility scooter is an excellent, low-cost way to be able to travel independently, both indoors and outdoors. mobility scooterMany people prefer a medical scooter over an electric wheelchair because they simply look cooler. There is a psychological advantage to not being confined in a wheelchair, and scooters offer a wide variety of styles, colors, and designs to make using a scooter more fun.

Mobility scooters can be broken down into three general types: the 3-wheel mobility scooter, the 4-wheel mobility scooter, and the compact mobility scooter. These three types of medical scooter cover a wide range of uses, from travel on rough terrain to navigation in tight areas such as store aisles.

A 3-wheel mobility scooter offers a tight turning radius and more room for long or stiff legs. A 4-wheel mobility scooter is more rugged and stabile, and can support weight of up to 500 pounds. A compact mobility scooter can be easily folded or disassembled for transportation in the trunk of a car.

A compact mobility scooter is also a good choice if the storage room in your home is limited. These medical scooters can be easily kept in an out-of-the-way corner or closet.

An electric mobility scooter is usually controlled with handlebars similar to those found on bicycles. They can reach speeds of up to 10 miles per hour, and some models can be used on roads, across fields, and up steep hills.

Another option for transporting a medical scooter is to use a simple trailer attached to the back of the car. With this kind of personal mobility vehicle, you do not have to buy a specially-equipped handicapped van to be able to travel in comfort.

A medical scooter is a cost-effective way to restore your mobility and independence. Even feature-packed models cost only a fraction of the price of an electric powered wheelchair. You can expect costs ranging from $1,000 to $5,000.

The scooter given to me by my sister and brother in law was one I selected after a lot of research. My criteria were as follows:

1.    At least 5 inches of ground clearance so uneven pavement, curbs, knobby grassy areas and other uneven paths would not hang me up or cause damage.

2.    Portability.  It had to come apart in at least two pieces with no piece heavier than 50 lbs.  It also had to be easy to assemble and disassemble with a minimum of lifting or bending.

3.    Capacity. I weight about 180 and wanted a scooter that would carry twice my weight just as a safety factor.  It also offers me the ability to carry some cargo like groceries or tools.

4.    Lighting.  Studies show that mobility vehicles with appropriate lighting are far less likely to be involved in an accident so mine has head and tail lights, brake lights, turn signals and hazard lights.

5.    Speed.  Most mobility vehicles are turtle slow like about 4 miles an hour.  The one I bought will go 8.  Obviously not speedy but fast enough.

6.    Distance.  Batteries ought to give you enough power to travel up to 20 miles.  Some only go 5 or 6 and that diminishes as you go faster or up hills.

7.    Transaxle.  A good scooter should be able to get up and down city hills.  A Transaxle acts like a transmission in a car and allows the vehicle to select the right gear for the grade

8.    Ease of mounting and dismounting.  The term speaks for itself.

9.    Leg room.  Again, the term speaks for itself

10.Cargo capacity.  Mine comes with a rear mounted basket that will hold up to 3 bags of groceries.

11. Reverse gear.  You don’t want to be up against a tree or curb and have to get off to lift and turn the vehicle. It must have a reverse gear.

12.Cane or crutch holder.  Many mobility riders need canes or crutches when they dismount and go on by foot.  Your vehicle should be able to accommodate this need.

13.Cup holder.  You are going to carry a drink, where will you put it?

14.Rear view mirror.  Just like a car, you need to be able to see what’s behind you.

15.Keyed ignition.  If you need a key to start and run it, it is more difficult to steal it.

16.Comfortable, adjustable seating.  It must be comfortable and adjustable for height and other needs.

17.Easy battery connectivity.  Batteries should be easily removable and replaceable without connecting wires or using tools.

18.Battery charging.  Your mobility vehicle should have the capacity to be charged by the car or truck’s electrical system instead of waiting to get home to plug it in.

19.Tires.  The bigger the better.

20.Number of wheels.  A four wheel scooter is more stable but a three wheel scooter is more maneuverable. 

21.Warranty and repair.  Make sure you get a good warranty and that your mobility vehicle is repairable nearby. 

In the end I chose a Tzora Titan three wheel scooter Tzora-TITAN-Titan-Scooter

That’s my list of criteria, you may develop your own but I think you can see that selecting a mobility vehicle is more complicated than going to Wal-mart and picking the first one you see.  Remember, too, that prices vary.  They range from as little as $500 to well over $5,000 depending on what you are seeking.

In some cases, should you choose a heavy duty, non-portable scooter you may be faced with the added expense of adding a lift or carrying platform to your car or truck.  Those items can also run into the thousands of dollars.

The point of all of this is, do your homework.  Carefully determine just exactly why you want a scooter and what  you will use it for.  And always ask yourself this question, “Is this the scooter I want, or is it the one I need.”  There could be a huge difference between the two.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our new music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

En Espanol

Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.

Por favor, consulte nuestro nuevo video musical “Dawn Anita The Gift of Life” en https://www.youtube.com/watch?v=eYFFJoHJwHs YouTube. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

Save Lives Now — Extend Kidney Anti-Rejection Drug Coverage


(At the end of this blog you will find a sample letter and links to your congressional and senate representatives.)

 

If someone told you that your government was willing to spend about $650,000 to save from $17,000 to $30,000 a year would you be surprised? 

Well I’m the someone, and I’m telling you that what I have described is absolutely true.  When your congress passed the End Stage Renal Disease (ESRD) law in 1972 then expanded Medicare to cover kidney transplants they bowed to pressure from the dialysis industry and limited anti-rejection medicine coverage to 36 months post-kidney transplant which resulted in the incredible expense I just described.

We can change that by putting some pressure on our elected officials to support a bill that ends this insanity.  I’ll give details in a bit, but first some medical information.

The human immune system is a marvelous mechanism that immediately attacks any foreign body it detects with its full force and fury.

A transplanted organ is a foreign object so the immune system makes every attempt to destroy it, not knowing that destroying the organ will kill the human. 

Enter anti-rejection drugs.  These powerful, expensive drugs suppress the immune system so that a transplanted organ can not only survive but will extend the life of the recipient.  The downside is that transplant patients are more susceptible to diseases because of their suppressed immune system.  Without anti-rejection drugs, though, the immune system will win and the person will die.

The U.S. Congress knew that when they expanded Medicare coverage for kidney transplants.  The law saved a lot of lives but it contains one very strange element.  It only allows Medicare to pay for anti-rejection drugs for 36 months.  After that the recipient is on the hook for from $17,000 to around $30,000 a year these very special drugs. Many patients have found that at the end of the 36 month period they simply couldn’t afford the expense and either cut back on the medication or quit taking it and went into rejection

Strangely, if the patient seeks medical help to stop the rejection, Medicare will leap back into action to rescue the patient that congressionally mandated policies put at risk and they will pay for hospitalization to stabilize the person and dialysis to keep them alive until they can get another Medicare paid transplant.  So let’s do some math, ignoring the cost of the initial transplant and the anti-rejection drugs (about $300,000).

Stabilize patient in hospital (estimate)………………….$50,000

Dialysis during 3-5 year wait for kidney…$216,000 to $360,000

Second transplant ………………………………………..$262,000

One patient gets two transplants meaning it’s entirely possible that another patient won’t get one.  Cost…incalculable.

Total: About $600,000 spent to save the $17,000 to $30,000 cost of the initial anti-rejection drugs.

The last time this issue came before congress was in 2009 and  opposition to expanding anti-rejection coverage came from a group calling itself the  Kidney Care Partners coalition which said “the kidney care community strongly objects” to the proposed changes. Oddly one of the organizations opposing this move was The National Kidney Foundation which was joined by dialysis providers, drug companies and nephrologists.

To pay for the expanded coverage, House Democrats had proposed setting a flat fee for dialysis treatments and related medications that some providers say would not cover costs. The Congressional Budget Office has calculated that the package would save the government $100 million over the next 10 years.

Dialysis providers argue that the bundled-payment mechanism may force some clinics to close. “We believe that the amendment as proposed, while helping one group of patients, would potentially put another very vulnerable group of patients at risk,” said the letter from Kidney Care Partners, which was signed by its chairman, Kent J. Thiry, the chief executive of DaVita, a large commercial dialysis provider.

The group instead proposed to pay for expanded drug coverage by delaying when Medicare would start covering kidney patients who also have private insurance.

The National Kidney Foundation, the largest advocacy group for renal patients, says it signed on to the letter because it shares the group’s concerns about bundling of payments. But Ellie Schlam, the foundation’s spokeswoman, said its support for extending coverage for anti-rejection drugs would ultimately outweigh its opposition to

The American Society of Transplantation supports the provision.  Currently there are over 100,000 Americans on the Kidney transplant waiting list a

What You Can Do

Recently Transplant living, which is a service of UNOS http://www.transplantliving.org/  recently published this information.

Support Anti-Rejection Drug Coverage Bill

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act, currently in the U.S. Senate and House of Representatives, will extend Medicare coverage of anti-rejection drugs for the rest of the patient’s life. This will help patients to keep their kidney transplants, shorten the transplant waiting list, and lower Medicare costs.

Call for action

Please consider contacting your Senators and House Member. To determine your Senators and House Member, go to http://www.congress.org and input your zip code under Get Involved.

Sample language

Dear Representative :

I am contacting you to request that you cosponsor important legislation for chronic kidney disease patients. H.R. 2969, the “Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011,” was introduced by Representatives Burgess and Kind to help kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new kidney.

Individuals with chronic kidney failure require kidney dialysis or a transplant to survive, and are eligible for Medicare regardless of age or other disability. There is no time limit on Medicare coverage for dialysis patients. However, transplant recipients who are not aged or disabled retain Medicare eligibility only for 36 months following their transplant. After their Medicare ends, they often face the challenge of obtaining group health insurance or other coverage, greatly increasing the risk of organ rejection if they cannot afford their required medications. If the transplanted kidney fails, they return to dialysis or receive another transplant, both of which are more costly (Medicare spends more than $77,000 annually on a dialysis patient and about $19,100 per year for a kidney transplant recipient, after the year of the transplant).

H.R. 2969 would extend Medicare Part B eligibility, and only for immunosuppressive medications. Coverage for any other health needs would end 36 months after the transplant, as under current law. The legislation also requires group health plans to maintain coverage of immunosuppressive drugs if they presently include such a benefit in their coverage. Lifetime immunosuppressive coverage will improve long term transplant outcomes, enable more kidney patients who lack adequate insurance to consider transplantation, and reduce the number of kidney patients who require another transplant. Nobody should lose a transplant because they are not able to pay for the drugs to maintain it. On behalf of thousands of transplant recipients, I respectfully request your support of this legislation.

Sincerely,

 

In order to help you write to your representative in congress Bob’s Newheart has provided the following resource. 

To find your U.S. Senator’s address click on this link http://www.senate.gov/general/contact_information/senators_cfm.cfm

To find your congressional representative click on this link.

http://www.house.gov/representatives/find/

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

 Espanol

Bob Aronson Newheart de Bob es un receptor de trasplante cardiaco 2007, el fundador de Facebook, casi 2.500 Iniciativa miembro de Trasplante de Órganos y el autor de la mayoría de los blogs de donación / trasplante.

Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.

Por favor vea nuestro video “Gracias desde el fondo de mi corazón Donante” en http://www.organti.org Este video fue producido para promover la donación de órganos por lo que es libre y no se necesita permiso para su uso.

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

                               

Are Elected Officials in Bed with the Dialysis Industry?


People who are diagnosed as needing organ transplants are end-stage patients.  That means medical science has run out of alternatives to extend life and a transplant is the last and most beneficial approach.  Transplants are not cures but they can offer a considerable extension of life provided the patient adheres to the program and has on-going, expert medical care.

At least twice very day a transplant recipient must take the daily dose of anti-rejection drugs.  They are effective but expensive.  They can run as high as $1,500 a month and if you quit taking them you can and likely will die.  If you are of retirement age or disabled your Kidney transplant is covered by Medicare and most of the cost of the drugs as well.  If you are under 65 and not disabled and diagnosed with End Stage Renal Disease (ESRD) your kidney transplant will still be covered by Medicare but your anti-rejection drugs will only be covered for 36 months and then you are on your own (detailed explanation below).

If after 36 months you go into rejection because you can’t afford the meds, Medicare will pay for dialysis and even pay for another transplant but not for the drugs which would prevent needing either.  The drugs would be a fraction of the cost of the two alternatives that are covered.  At best that is just plain dumb!

Someone said a long time ago that, “If you like either sausage or the law, you should watch neither being made.”  Well, that certainly applies to this issue.  Another of my favorite expressions which also applies here is, “No one’s life, liberty or property are safe when the legislature is in session.”  These two expressions apply perfectly to the anti-rejection medicine silliness.

The entire situation and what to do about it is explained below.

The Current State Of Access to Post transplant Care

By

Christine S. Rizk, JD, and Sanjiv N. Singh, MD, JD

http://virtualmentor.ama-assn.org/2012/03/pfor3-1203.html

Virtual Mentor. March 2012, Volume 14, Number 3: 250-255. American Medical Association

This article provides historical perspective on the evolution of coverage for kidney transplant patients and attempts to identify what initiatives would most effectively and efficiently improve their survival.

As of January 24, 2012, in the United States, there were 112,767 waitlist candidates on the various national transplant registries [2]. Of those candidates, 90,563 were waiting for kidneys, but in 2011 only 13,430 kidney transplants were performed [3]. The need for kidneys far outweighs the availability of suitable donor organs, and some postulate that the Patient Protection and Affordable Care Act of 2010 (ACA) may worsen the shortage by eliminating barriers to insurance coverage based on preexisting conditions, lifetime coverage caps, and required periods of pretransplant dialysis [4].

Even more critical from a clinical, economic, and moral perspective is the fact that the additional end-stage renal disease (ESRD) patients now expected to receive transplants by 2014 will be most vulnerable in the posttransplant phase of care. Coverage for pre transplant dialysis and maintenance drugs for ESRD, but not post transplant care, receives strong support in Washington from large dialysis and pharmaceutical companies, which derive significant profits from dialysis, ESRD drugs, and dialysis-related services [5]. For ESRD patients, dialysis is covered by Medicare for life [6].

For posttransplant care, however, Medicare coverage is limited, providing only 80 percent of the cost of immunosuppressive medications for 36 months after transplantation (for those whose Medicare entitlement is based on ESRD) and no coverage thereafter. Despite the fact that effective and long-term immunosuppression is essential for survival of transplant patients [7], the vast majority are left to fund 20 percent of the cost for the first 3 years of immunosuppressive drugs ($13,000 to $15,000 total cost per year per patient) [8], and, for patients under 65 who are not disabled, all of the cost of immunosuppressive drugs thereafter [9].

Not surprisingly, this system leads to noncompliance. Many patients cope with the financial burden by “spreading out” their anti-rejection drugs, taking them less often or not at all [10, 11]. A recent meta-analysis reports that “about 22.6 of 100 adult transplant patients per year fail to take anti-rejection drugs” [12]. If allograft failure occurs due to nonadherence or a patient is considered unable to pay for posttransplant costs, with few exceptions, she is typically not relisted [13, 14]. According to a study focusing on medication nonadherence among transplant patients, nonadherence was more prevalent among kidney recipients than among recipients of other organs and more prevalent in the United States than in Europe [12].

Legislative History

Congress has continually struggled with the tension between supporting low-income patients and controlling the costs of government-funded health care. The legislative history of renal-transplant drug coverage highlights this struggle.

The Social Security Act Amendments of 1965, which created Medicare and Medicaid, initiated medical insurance for seniors, families with dependent children, the blind, and the disabled [15]. At the SSA’s inception, Medicare provided for prescription drugs that were administered in the physician’s office but did not provide coverage for outpatient prescription drugs [14].

In 1972, on the eve of President Richard Nixon’s reelection, after much debate and political pressure to expand health care insurance, amendments were passed that provided increased coverage in specific areas. They specifically designated chronic kidney disease patients “disabled” for the purpose of receiving Medicare coverage but only after at least 3 months of dialysis and only for 12 months after transplantation [16].

Undoubtedly, these amendments were the original and now obviously outdated roots of the notion that posttransplant care benefits should be time-limited. At the time, such a notion was defensible. Dialysis was then a cost-effective and, more importantly, still superior way to extend lives, while kidney transplantation was a risky medical procedure on the frontier of available therapies. In the decades that would follow, however, renal transplantation outpaced dialysis in mortality reduction and overall clinical outcomes [17]. Meanwhile, the number of eligible patients who used dialysis far exceeded expectations, and the ESRD entitlement became quite costly [14].

In the last 3 decades, the dialysis entitlement has remained largely intact while posttransplant entitlements have waxed and waned in small stutters.

  • As a response to the increased costs of dialysis, Congress passed an amendment in 1978 extending Medicare posttransplant coverage from 1 year to 3 years; however, this amendment did not cover the cost of outpatient immunosuppressive medications [14].
  • In 1984, Congress passed the National Organ Transplant Act of 1984 to ban the sale of organs [18]; extended coverage for immunosuppressive drugs was considered but ultimately left out of the bill, mostly due to funding concerns and political bargaining [14].
  • Posttransplant drug coverage gained some traction in the Omnibus Budget Reconciliation Act of 1987 which included Medicare coverage of 80 percent of a kidney transplant recipient’s immunosuppressive drug costs (including outpatient immunosuppressive prescription drugs) for 1 year after transplant [14, 19]. This was eventually extended, in 1997, to cover 36 months of immunosuppressive drug costs [9].
  • In 2000, Congress extended Medicare coverage of immunosuppressive drug costs to the life of the patient, but only for those who are disabled or over 65. This often leaves those patients most at risk for nonadherence and noncompliance—i.e., younger kidney recipients under 65—uninsured after 3 years [14].

Despite decades of legislative history and clinical data revealing the obvious gaps in posttransplant care entitlements, extending the duration of coverage for immunosuppressive-drug costs was not included in the ACA. In a provocative piece published in 2010 in the Clinical Journal of the American Society of Nephrology, Cohen and colleagues assert that “in response to pressure from the corporate dialysis community and their kidney coalition, several members of Congress acted to prevent the patient immunosuppressive provision from being included in the final health care reform package. Some of these opposing voices on Capitol Hill have been generously supported by the large dialysis providers for years” [5].

It is theoretically possible that the ACA’s insurance exchanges will include lifetime coverage for immunosuppressive drugs. These exchanges will not be implemented until 2014, however. Moreover, it is not clear exactly what type of coverage will be offered and whether such lifetime coverage will be offered in the lower-priced options, where it is most needed [9].

Cost Savings for the Federal Government

Continuing the current limitations on coverage of posttransplant medications is actually costing the health care system more money in the long term. Studies have shown that it is less costly to continue covering the cost of immunosuppressive drugs for kidney transplant patients after 36 months than it is to cover the costs of resuming dialysis for the same population. For example, a University of Maryland study concluded that it was more cost-effective to continue covering immunosuppressive drugs than it was to pay for dialysis, finding that “the breakeven point was 2.7 years for all of the cases [it] analyzed and for 30 percent of all patients who did not need to be readmitted to the hospital during the year after their transplant, the breakeven point was only 1.7 years” [10]. A study conducted by the Institute of Medicine (IOM) also concluded that lifetime coverage of immunosuppressive drugs would lead to cost savings because it would reduce nonadherence and thereby improve kidney allograft survival, reducing long-term reliance on dialysis [12].

Current Legislation

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplants Patients Act of 2011, currently pending in committee in both the House and the Senate, would extend coverage of immunosuppressive drugs for kidney transplant patients for the lifetime of the kidney [20, 21]. The bill is bicameral, bipartisan, and supported by the transplant community [22]. As noted by Cohen et al, however, similar attempts have failed in the past, most recently with the proposed Durbin amendment to the ACA [5]. Similar attempts by Congress in 2003 and 2007 to extend lifetime immunosuppressive coverage also failed in the wake of funding concerns and political jockeying [14].

Conclusion

Extending immunosuppressive drug coverage for the lifetime of kidney patients is a cost-effective way for the federal government to increase the value of health care by improving clinical outcomes for those with ESRD while avoiding the costs of resuming dialysis and allograft failure. Low-income kidney transplant patients currently suffer heavy financial burdens and are denied access to transplant relisting because of their inability to pay for critical drugs. There is a clinical, economic, and moral imperative to, at long last, bridge this coverage gap—a gap that lies at the core of effective transplant care and detracts from the movement for comprehensive coverage begun by the Affordable Care Act.

Transplant Living http://tinyurl.com/brwj3je  suggests you contact your Senators and Congressional Representatives to urge their support of the measure that would extend anti-rejection medication coverage from 36 months to lifetime.

Sample language

Dear Representative :

I am contacting you to request that you cosponsor important legislation for chronic kidney disease patients. H.R. 2969, the “Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011,” was introduced by Representatives Burgess and Kind to help kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new kidney.

Individuals with chronic kidney failure require kidney dialysis or a transplant to survive, and are eligible for Medicare regardless of age or other disability. There is no time limit on Medicare coverage for dialysis patients. However, transplant recipients who are not aged or disabled retain Medicare eligibility only for 36 months following their transplant. After their Medicare ends, they often face the challenge of obtaining group health insurance or other coverage, greatly increasing the risk of organ rejection if they cannot afford their required medications. If the transplanted kidney fails, they return to dialysis or receive another transplant, both of which are more costly (Medicare spends more than $77,000 annually on a dialysis patient and about $19,100 per year for a kidney transplant recipient, after the year of the transplant).

H.R. 2969 would extend Medicare Part B eligibility, and only for immunosuppressive medications. Coverage for any other health needs would end 36 months after the transplant, as under current law. The legislation also requires group health plans to maintain coverage of immunosuppressive drugs if they presently include such a benefit in their coverage. Lifetime immunosuppressive coverage will improve long term transplant outcomes, enable more kidney patients who lack adequate insurance to consider transplantation, and reduce the number of kidney patients who require another transplant. Nobody should lose a transplant because they are not able to pay for the drugs to maintain it. On behalf of thousands of transplant recipients, I respectfully request your support of this legislation.

Sincerely,

 

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Obamacare — Your Questions Answered


Whether your agree with it or not, the Affordable Care Act, also known as “Obamacare” is one of the most significant pieces of legislation ever to pass the U.S. Congress. Some of it is already in effect but it will continue to unfold in years to come.

Politics aside, there are thousands of questions about this sweeping reform of American healthcare and this post only answers a few, but they are important questions.  Others will emerge as the act unfolds and people have real, day to day experience with it.

What you are about to read was developed by the Henry J. Kaiser Foundation, a non-profit, non-partisan research organization.  This is what their website says about them:

The Henry J. Kaiser Foundation http://www.kff.org/

Who We are

A leader in health policy analysis, health journalism and communication, the Kaiser Family Foundation is dedicated to filling the need for trusted, independent information on the major health issues facing our nation and its people.  Kaiser is a non-profit, private operating foundation focusing on the major health care issues facing the U.S., as well as the U.S. role in global health policy.  Unlike grant-making foundations, Kaiser develops and runs its own research and communications programs, sometimes in partnership with other non-profit research organizations or major media companies.

We serve as a non-partisan source of facts, information, and analysis for policymakers, the media, the health care community, and the public. Our product is information, always provided free of charge — from the most sophisticated policy research, to basic facts and numbers, to information young people can use to improve their health or elderly people can use to understand their Medicare benefits.

The Kaiser Family Foundation is not associated with Kaiser Permanente or Kaiser Industries.

A Post-election Consumer’s Guide to Health Reform

By Mary Agnes Carey and Jenny Gold, Kaiser Health News

Now that President Barack Obama has won a second term, the Affordable Care Act is back on a fast track.

Some analysts argue that there could be modifications to reduce federal spending as part of a broader deficit deal; for now, this is just speculation. What is clear is that the law will have sweeping ramifications for consumers, state officials, employers and healthcare providers, including hospitals and doctors.

While some of the key features don’t kick in until 2014, the law has already altered the health care industry and established a number of consumer benefits.

Here’s a primer on parts of the law already up and running, what’s to come and ways that provisions could still be altered.

I don’t have health insurance. Under the law, will I have to buy it and what happens if I don’t?

Today, you are not required to have health insurance . But beginning in 2014, most people will have to have it or pay a fine. For individuals, the penalty would start at $95 a year, or up to 1 percent of income, whichever is greater, and rise to $695, or 2.5 percent of income, by 2016.

For families the penalty would be $2,085 or 2.5 percent of household income, whichever is greater. The requirement to have coverage can be waived for several reasons, including financial hardship or religious beliefs.

Millions of additional people will qualify for Medicaid or federal subsidies to buy insurance under the law.

While some states, including most recently Alabama, Wyoming and Montana, have passed laws to block the requirement to carry health insurance, those provisions do not override federal law.

I get my health coverage at work and want to keep my current plan. Will I be able to do that? How will my plan be affected by the health law?

If you get insurance through your job, it is likely to stay that way. But, just as before the law was passed, your employer is not obligated to keep the current plan and may change premiums, deductibles, co-pays and network coverage.

You may have seen some law-related changes already. For example, most plans now ban lifetime coverage limits and include a guarantee that an adult child up to age 26 who can’t get health insurance at a job can stay on her parents’ health plan.

What other parts of the law are now in place?

You are likely to be eligible for preventive services with no out-of-pocket costs, such as breast cancer screenings and cholesterol tests.

Health plans can’t cancel your coverage once you get sick – a practice known as “rescission” – unless you committed fraud when you applied for coverage.

Children with pre-existing conditions cannot be denied coverage. This will apply to adults in 2014.

Insurers will have to provide rebates to consumers if they spend less than 80 to 85 percent of premium dollars on medical care.

Some existing plans, if they haven’t changed significantly since passage of the law, do not have to abide by certain parts of the law. For example, these “grandfathered” plans can still charge beneficiaries part of the cost of preventive services.

If you’re currently in one of these plans, and your employer makes significant changes, such as raising your out-of-pocket costs, the plan would then have to abide by all aspects of the health law.

I want health insurance but I can’t afford it. What will I do?

Depending on your income, you might be eligible for Medicaid. Currently, in most states nonelderly adults without minor children don’t qualify for Medicaid. But beginning in 2014, the federal government is offering to pay the cost of an expansion in the programs so that anyone with an income at or lower than 133 percent of the federal poverty level, (which based on current guidelines would be $14,856 for an individual or $30,656 for a family of four) will be eligible for Medicaid.

The Supreme Court, however, ruled in June that states cannot be forced to make that change. Republican governors in several states have said that they will refuse the expansion, though that may change now that Obama has been re-elected.

What if I make too much money for Medicaid but still can’t afford to buy insurance?

You might be eligible for government subsidies to help you pay for private insurance sold in the state-based insurance marketplaces, called exchanges, slated to begin operation in 2014. Exchanges will sell insurance plans to individuals and small businesses.

These premium subsidies will be available for individuals and families with incomes between 133 percent and 400 percent of the poverty level, or $14,856 to $44,680 for individuals and $30,656 to $92,200 for a family of four (based on current guidelines).

Will it be easier for me to get coverage even if I have health problems?

Insurers will be barred from rejecting applicants based on health status once the exchanges are operating in 2014.

I own a small business. Will I have to buy health insurance for my workers?

No employer is required to provide insurance. But starting in 2014, businesses with 50 or more employees that don’t provide health care coverage and have at least one full-time worker who receives subsidized coverage in the health insurance exchange will have to pay a fee of $2,000 per full-time employee. The firm’s first 30 workers would be excluded from the fee.

However, firms with 50 or fewer people won’t face any penalties.

In addition, if you own a small business, the health law offers a tax credit to help cover the cost. Employers with 25 or fewer full-time workers who earn an average yearly salary of $50,000 or less today can get tax credits of up 35 percent of the cost of premiums. The credit increases to 50 percent in 2014.

I’m over 65. How does the legislation affect seniors?

The law is narrowing a gap in the Medicare Part D prescription drug plan known as the “doughnut hole.” That’s when seniors who have paid a certain initial amount in prescription costs have to pay for all of their drug costs until they spend a total of $4,700 for the year. Then the plan coverage begins again.

That coverage gap will be closed entirely by 2020. Seniors will still be responsible for 25 percent of their prescription drug costs. So far, 5.6 million seniors have saved $4.8 billion on prescription drugs, according to the Department of Health and Human Services.

The law also expanded Medicare’s coverage of preventive services, such as screenings for colon, prostate and breast cancer, which are now free to beneficiaries. Medicare will also pay for an annual wellness visit to the doctor. HHS reports that during the first nine months of 2012, more than 20.7 million Medicare beneficiaries have received preventive services at no cost.

The health law reduced the federal government’s payments to Medicare Advantage plans, run by private insurers as an alternative to the traditional Medicare. Medicare Advantage costs more per beneficiary than traditional Medicare. Critics of those payment cuts say that could mean the private plans may not offer many extra benefits, such as free eyeglasses, hearing aids and gym memberships, that they now provide.

Will I have to pay more for my health care because of the law?

No one knows for sure. Even supporters of the law acknowledge its steps to control health costs, such as incentives to coordinate care better, may take a while to show significant savings. Opponents say the law’s additional coverage requirements will make health insurance more expensive for individuals and for the government.

That said, there are some new taxes and fees. For example, starting in 2013, individuals with earnings above $200,000 and married couples making more than $250,000 will pay a Medicare payroll tax of 2.35 percent, up from the current 1.45 percent, on income over those thresholds. In addition, higher-income people will be taxed 3.8 percent on unearned income, such as dividends and interest.

Starting in 2018, the law also will impose a 40 percent excise tax on the portion of most employer-sponsored health coverage (excluding dental and vision) that exceeds $10,200 a year and $27,500 for families. The tax has been dubbed a “Cadillac” tax because it hits the most generous plans.

In addition, the law also imposes taxes and fees on several major health industries. Beginning in 2013, medical device manufacturers and importers must pay a 2.3 percent tax on the sale of any taxable medical device to raise $29 billion over 10 years. An annual fee for health insurers is expected to raise more than $100 billion over 10 years, while a fee for brand name drugs will bring in another $34 billion.

Those fees will likely be passed onto consumers in the form of higher premiums.

Hasn’t the law hit some bumps in the road?

Yes. For example, the law created high-risk insurance pools to help people buy health insurance. But enrollment in the pools has been less than expected. As of Aug. 31, 86,072 people had signed up for the high-risk pools, but the program, which began in June 2010, was initially expected to enroll between 200,000 and  400,000 people. The cost and the requirements have been difficult for some to meet.

Applicants must be uninsured for six months because of a pre-existing medical condition before they can join a pool. And because participants are sicker than the general population, the premiums are higher.

Enrollment has increased since the summer, after the premiums were lowered in some states by as much as 40 percent and some states stepped up advertising.

A long-term care provision of the law is dead for now. The Community Living Assistance Services and Supports program (CLASS Act) was designed for people to buy federally guaranteed insurance that would have helped consumers eventually cover some long-term-care costs. But last fall, federal officials effectively suspended the program even before it was to begin, saying they could not find a way to make it work financially.

Are there more changes ahead for the law?

Some observers think there could be pressure in Congress to make some changes to the law as a larger package to reduce the deficit. Among those options is scaling back the subsidies that help low-income Americans buy health insurance coverage. The amount of the subsidies, and possibly the Medicaid expansion as well, could be reduced.

It’s also possible that some of the taxes on the health care industry, which help pay for the new benefits in the health law, could be rolled back. For example, legislation to repeal the tax on medical device manufacturers passed the House with support from 37 Democrats (it is not expected to receive Senate consideration this year). Nine House Democrats are co-sponsoring legislation to repeal the law’s annual fee on health insurers.

Meanwhile, the Independent Payment Advisory Board (IPAB), one of the most contentious provisions of the health law, is also under continued attack by lawmakers. IPAB is a 15-member panel charged with making recommendations to reduce Medicare spending if the amount the government spends grows beyond a target rate. If Congress chooses not to accept the recommendations, lawmakers must pass alternative cuts of the same size.

Some Republicans argue that the board amounts to health care rationing and some Democrats have said that they think the panel would transfer power that belongs on Capitol Hill to the executive branch. In March, the House voted to repeal IPAB but that bill did not get past the Senate.

Kaiser Health News is an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Election 2012 — Senior Citizen Transplants & Healthcare Coverage to Diminish


This is a presidential election year and because of the debate over Medicare, Obamacare and the federal deficit Senior Citizens had better sit up and take notice.  Regardless of who wins big changes are in store that will affect the lives of current and future senior citizens.  While this blog usually confines itself to organ donation/transplantation issues the all-encompassing nature of the healthcare debate caused us to broaden our perspective. From our vantage point this is how the Medicare/Obamacare/deficit debate shakes out.

When it comes to health care in America we have the known (Medicare as it currently stands and the Affordable Care Act or “Obamacare) and we have the unknown (Romney/Ryan – roughly outlined plan)

Here’s what we know we have now and what we can expect.

  • If you are 65 years old and need an organ transplant Medicare will pay 80% of the cost (your supplemental will pick up the rest) and will pay the full cost of all of your ant- rejection drugs as long as you live.
  • If you are officially disabled, regardless of age, Medicare will offer the same transplant and anti-rejection coverage.
  • If you are under 65 but suffer from Kidney Disease Medicare will cover 80% of the cost of a transplant and will fully cover anti-rejection drugs for 36 months.  Medicare will also cover the cost of dialysis until you get a transplant
  • If you qualify Medicaid, which is mostly federally funded but state run, will cover transplants and the cost of medication but with recent cuts many people will not qualify for transplants.
  • Under “Obamacare” If you are covered by Medicare Part D (that’s prescription coverage) your costs will keep going down until they disappear almost completely in 8 years (2020) that’s when the donut hole closes.
  • 14.3 million Senior citizens in America have already received important preventive benefits under The Affordable Care Act including an annual checkup, without paying any deductibles or co-pays. Also millions of Americans are getting cancer screenings, mammograms, and other preventive services at no charge, but the status quo cannot last.  Even if Medicare/Obamacare survives it will have to change, there will be cuts because the cost of providing care is just too high.  Changes could include a later starting date for Medicare to age 66 or 67; more limited coverage; lowering coverage from 80 to 70%; higher premiums; fewer drugs covered under Part D to name just a few.
  • Still unknown is what change will be made in organ allocation policy.  Under consideration is a measure that would allocate organs by potential long term survivability. That simply means that age will become more of a factor.  Under this practice younger organs would go to younger people because both the organs and the recipient have longer expected life spans.  For example, if an organ came from someone who was 40 years old it might be expected that it would survive another 25 years.  If a potential recipient was 65 and had an expected life span of 75 the available organ might instead go to someone younger, even though the younger person might not be as sick.  A very tough ethical question being asked in light of the on-going organ shortage.

Romney/Ryan are promising to “Change the system for the better.” Unfortunately we don’t know what that is.  What we do know is that both men have committed to repealing the Affordable Care Act.  If they do that, the donut hole will open again, maybe bigger than ever, preventive services will disappear and many senior citizens may be faced with making horrible choices like, eating instead of taking medications.

The GOP ticket is also committed to further spending cuts and if past performance is an indication Medicaid will get cut again, which may mean that there will be few if any Medicaid financed organ transplants.

While neither of the GOP team has said a word about Transplant coverage one certainly gets the feeling that everything to do with health care is on the table.  Here’s the Romney plan according to the Los Angeles Times.

“Romney has said he would waive as much of the 2010 law as he could through his authority as president, and push Congress to repeal the rest. In its place, he would seek a premium-support system like the one Ryan proposed for those becoming eligible for Medicare in 2022 and beyond. Private insurers would compete with Medicare in a new marketplace, or exchange, with each offering coverage roughly equivalent to what Medicare offers. Instead of offering seniors Medicare coverage, the government would provide an insurance subsidy equal to the second-least-expensive offering in the exchange. Seniors who didn’t want that particular coverage could use the subsidy to buy the less expensive insurance and keep the change, or sign up for more expensive coverage and pay the difference out of pocket.”  http://tinyurl.com/8jl5xpb

A new report, (August 24, 2012) from the Center for American Progress finds that the Romney/Ryan proposal to transform Medicare’s guaranteed benefit into a “premium support” structure for future retirees could increase costs by almost $60,000 for seniors reaching the age of 65 in 2023. http://tinyurl.com/9rh2pyo  The Romney/Ryan campaign says this report is inaccurate.

Here’s what bothers me about the Romney/Ryan plan.  It turns nearly everything over to the private sector which, when combined with the Republican penchant for de-regulation, threatens the elderly with minimal coverage for maximum cost for a minimum of people.

Perhaps Romney/Ryan will come up with a more detailed proposal that will offer more certainty, but this sounds too much like a dismantling of Medicare with the result being that seniors will just buy insurance in the private marketplace like everyone else.  Most importantly, though, it appears that Obamacare offers a more certain possibility of organ transplant coverage than does Romney/Ryan which makes no mention of the procedure.  Additionally, if the Affordable Care Act is repealed, pre-existing conditions will return which would automatically rule out anyone who needs a transplant.  And…along those same lines, I can’t think of a single senior citizen who doesn’t have at least one pre-existing condition that would prevent insurance coverage.

On balance, both options leave a lot to be desired for seniors, but repeal of the Affordable Care Act would be a disaster for many of us, especially when faced with the ever increasing cost of drugs, and the senior citizen need for more medications as we age.  Re-opening the donut hole is just not an acceptable option for us.

There is still plenty of time between now and Election Day for Romney/Ryan to clarify their plan and to specifically mention organ and tissue transplant coverage but until they do this blog will play it safe and endorse the present flawed but more understandable Medicare/Obamacare system.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Big Pharma They Love a Sick Population and Want To Keep it That Way


As most of our readers know I am not only a senior citizen but one who has had a heart transplant.  I am on Medicare, have supplemental insurance and also participate in Medicare Part D, the prescription drug program.

Both age and my status as a transplant recipient cause me to take several expensive drugs.  While anti-rejection drugs are fully covered by Medicare others for blood pressure, COPD and thyroid are not.  They are expensive, very expensive and while in the so-called “Donut hole” we have paid nearly $1,000 a month so the price of prescription drugs is a big issue in our home.  Upon passage of the affordable care act the cost was cut in half but $500 a month is still a lot of money.  That’s my lead in to this question.

Will someone please offer a reasonable, understandable and clear explanation as to why Medicare is not allowed by law to negotiate the price of drugs?  I have researched this issue for hours and can’t find a simple explanation.  There are a lot of convoluted, rambling excuses but not a clear reason.  Here’s an example of the reasoning Pharmaceutical companies use for their opposition to allowing Medicare to negotiate the price of drugs (like the Veterans Administration does).  “Federal price negotiations would represent a policy change carrying significant risks for research and development investment in new and improved medicines. A substantial body of research shows that similar federal drug programs impose prices substantially lower than those negotiated in the private sector, and that such lower prices inevitably will reduce research and investment in new and improved medicines. This slowdown in pharmaceutical innovation will yield highly adverse effects upon future patients in terms of reduced life expectancies.”

Yakkity, Yak, blah, blah, blah!.  On one hand big pharma tells us that negotiating drug prices would cut research money while on the other hand we learn they have spent $2.3 billion on lobbying and $183 million on campaign contributions since 1998, according to the Center for Responsive Politics. The ready money serves as a strong deterrent against any legislative proposal that would lower costs for consumers and profits for the drug makers.  Furthermore keeping drug prices high for seniors adds $150 to $300 Billion to drug industry profits over a ten year period. The increased costs hit the pockets of both seniors and taxpayers.

Yeah, those poor pharma people sure are hurting.  When you are willing to spend over $2 Billion to protect your profitability, profitability must be sky high.  I don’t know how, in good conscience any member of congress or the President of the United States can oppose giving Medicare the right to negotiate the price of drugs.  They are, after all, probably the biggest supplier of drugs in the world but that’s not the end of the pharma, health insurance, special interest war on us (yes us, you and me) campaign.

Let us take a look at the drugs that keep organ transplant patients alive. They are called immunosuppressants or more commonly, anti-rejection drugs.  Here’s the story. If you are of retirement age or disabled or somehow covered by Medicare they will pay 80% of the cost of an organ transplant and the full cost of those absolutely necessary anti- rejection drugs for the rest of your life.  Without them organ transplant patients would die.

Here’s the rub —  If you have kidney disease (only kidney patients are eligible for this program) and are not disabled or of retirement age Medicare will pay 80% of the cost of the transplant but will only provide you with free anti-rejection drugs for thirty six months.  Some people would say, “That’s fair, a person should be able to go back to work and pay for their own drugs,” and that is a reasonable thought but the price of anti-rejection drugs is anything but reasonable.  They can cost from $1,000 to $3,000 per month, for life.  If you stop taking them your body will begin to reject your organ and you could die.

Now here’s where the story becomes absolute nonsense.  Let’s assume you can’t pay for the drugs and you go into rejection and are hospitalized.  Medicare will pay 80% of the cost of your care and even 80% of the cost of another transplant and if a transplant able organ is not available they will pay for you to be on dialysis for the rest of your life.  Taxpayers spend more than $20 billion a year to care for about 400,000 people who get dialysis treatments — about $77,000 per patient.  The most that anti-rejection drugs would cost would be less than half that amount, $36,000 per year, yet congress refuses to allow Medicare to pay for the drugs. Every year a bill is introduced that would at least extend the 36 month period if not eliminate it entirely but it is defeated every time.

If you think all of this is pretty stupid, it gets dumber. One of the organizations that has opposed extending the 36 month period is the National Kidney Foundation (NKF).  NKF says they oppose the added benefit because money to pay for it would have to come out of dollars earmarked for dialysis coverage, but wait…if patients had the drugs they wouldn’t need dialysis, would they?  Do you get the idea that NKF has an interest in keeping the dialysis industry alive?  The dialysis industry is huge and there are only two major players.  If you want to learn more about this industry go to http://www.propublica.org/article/in-dialysis-life-saving-care-at-great-risk-and-cost

There is an adage that says  you shouldn’t let the fox guard the chicken coop but it seems that is what has happened in health care generally but certainly in the two situations I outlined here.  According to Open Secrets.com, The Pharmaceutical industry alone spends billions of dollars on influencing our lawmakers…here’s the chart…

Top Contributors, 2011-2012

Contributor

Amount

Pfizer   Inc

                $1,287,136

Amgen   Inc

                 $1,017,312

Abbott   Laboratories

                 $868,480

Stryker   Corp

                 $819,464

AstraZeneca   PLC

                 $794,863

Merck   & Co

                 $763,935

Johnson   & Johnson

                 $716,541

Upsher-Smith   Laboratories

                 $612,900

Eli   Lilly & Co

                 $571,179

McKesson   Corp

                 $555,125

4Life Research

                 $539,950

EOE   Inc

                 $525,000

GlaxoSmithKline

                 $493,472

Masimo   Corp

                 $469,468

AmerisourceBergen   Corp

                 $461,877

Roche   Holdings

                 $458,940

Novartis   AG

                 $454,089

Harris   Frc

                 $351,000

Bayer   AG

                 $341,715

Sanofi

                 $299,526

Contributions to Democrats  Republicans  Outside Spending Groups

Top Recipients, 2011-2012

Candidate

Office

Amount

Obama, Barack (D)      $785,385
Romney, Mitt (R)      $622,986
Hatch, Orrin G (R-UT)

Senate

     $327,627
Upton, Fred (R-MI)

House

     $253,615
Brown, Scott (R-MA)

Senate

     $246,953

This election cycle has us talking about the economy and where our money is going and it’s missing the boat completely.  Your money, most of your money, maybe all of your money will eventually go to the Pharmaceutical companies and there is little or no control over them.  The spend Billions of dollars influencing our lawmakers to make sure that their profitability is left unchecked and for the most part it is.

It is big Pharma that doesn’t want Medicare to negotiate the price of drugs, so you pay more, it is big Pharma that inflates the price of some drugs to such a high point that some families either can’t afford them and die or lose everything to pay for them.  It is big Pharma that produces drug X for $5.00 in Mexico and the same drug for $50.00 in the U.S. and then they want a ban on going to Mexico to get it cheaper.  It is big Pharma that gouges the elderly to the point where some have to choose between eating and taking their meds.  These ultra capitalists have no heart and no soul.  They think, eat, sleep and dream profits and boy are they good at it.

Healthcare has long been one of my favorite topics and while it has taken me far to long to arrive at this conclusion I have arrived.  It seems quite obvious that the nearly $1 trillion a year worldwide pharmaceutical business primary goal is to make sure we either are sick or think we are sick.   Consider this, they don’t make a dime on dead or well people so making us sick or having us believe we are sick is good for business.  Think about all the syndromes we hear about restless legs, carpal tunnel syndrome, cervical syndrome, chediak-higashi syndrome, chinese restaurant syndromeonder chronic fatigue immune dysfunction syndrome, churg-strauss syndrome, conn’s syndrome, cornelia de lange syndrome  and costochondral syndrome…and this is a short list.  All of those syndromes, real or imagined are treated by some sort of medication, expensive medication.  the Pharmaceutical companies love syndromes and discover them with great regularity so they can convince physicians to diagnose them and then prescribe for the malady.

Isn’t it interesting that none of the current crop of politicians ever talks about this elephant in the living room. Pharmaceutical companies have a vested interest in keeping us just a little bit sick so they can sell the expensive treatments they have developed.  Which makes you this, “do they ever seriously look for cures?”  Why would they?   There’s nowhere near as much money in a cure as there is in a new drug to treat an existing condition.

And…consider this, too.  There is a wide variety of serious diseases that affect very few people, they are called “Orphan” diseases like  acrocephalosyndactylia, Acrodermatitis, Addisons disease,Aamyotophic Lateral Sclerosis, Adie Syndrome, Amylose, Asperger Syndrome,Barret Esophagus, Bardet-biedl syndrome and thousands more.  These diseases are rare enough that little research big Pharma money is spent on trying to find either cures or treatments because there’s not enough potential profit in it.   Why spend money on a disease that affects a few thousand when you can develop a drug that affects millions and increase profits substantially.

Big Pharma control of our health and what we pay to either fix it or keep it is an issue that affects everyone but for some strange reason we’d rather talk about who marries who, Prince William’s nudity in a hotel and tax cuts for rich people.  Americans ought to wake up and see what is really affecting their daily lives and their wallets.  It’s not two women who want to marry each other.  It’s big Pharma and if you look closely at any time of the night or day they have a hand in your wallet.

 

 

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Not Enough Transplantable Organs, Thousands Die…Options for Change


There will come a time when organ/tissue/blood donors are no longer needed.  Advancements in mechanical devices, therapeutic cloning (duplication of organs not people) and regenerative methods will negate the need for human donation.  But, that’s not going to happen any time soon and until it does we are going to have a shortage that results in thousands of unnecessary deaths.

Twenty eight years ago, The National Organ Transplant Act (NOTA) was approved.  Sponsored by Democrat Representative Al Gore and Republican Senator Orin Hatch the act outlawed the sale of human organs and provided for the establishment of a volunteer (Altruistic) system of organ donation in the United States. NOTA  also authorized the Department of Health and Human Services (DHHS) to make grants for the planning and establishment of Organ Procurement Organizations (OPOs); and established the formation of the Organ Procurement and Transplantation Network (OPTN). 

That was 28 years ago.  Since then thousands of lives have been saved by organ transplants but the number of available organs has always, from the very beginning, lagged behind the number of people who need them.

As of right now there are 112,640 waiting list candidates but so far this year there have been only 23,745 transplants done and only 11,711 donors (data from UNOS, the United Network for Organ Sharing www.unos.org ). The numbers are really all the evidence we need to show that the altruistic system is not working.  Each year about 6,000 people die while waiting for a transplant.  Thousands of other Americans never even get on the list because of a lack of access to specialized care or because they can’t afford a transplant. 

While many find this to be an intolerable situation neither DHHS nor UNOS seem interested in making any change to the system.  From time to time they will assemble “Ethics” panels to study ways to augment or change it but the answer is always the same, “Unethical.” One can easily ask, “What is ethical about letting all these people die?  How can you possibly look at these numbers and say, “Presumed consent and/or some kind of compensation system for donors, is unethical?”  Surely something can be designed that will provide the needed number of organs and still be an ethical practice.

I recognize that the highly skilled, educated professionals who make these “Ethical” decisions are faced with a double edged sword 1) changing the system could produce negative publicity and affect their reputations and perhaps some funding and 2) the ethics of allowing people to die.  Given those conditions it still seems that allowing people to die is more unethical than making some well-considered changes that would harm no one and benefit many. And…the situation is only going to get worse because modern technology is allowing people to live longer which is adding to the list of people waiting for transplants.

Twenty eight years of letting people die.  About 168,000 people are gone because the Ivory tower thinkers refuse to or are afraid to make a change.  Had changes been made in the past many of the 168,000 casualties would be alive today and who knows what contributions they might have made to our society.   

As I noted in the first paragraph, in the long term we probably won’t need to have a donor system but it will be many years before any of those means become commonly practical.  So we’re stuck with the old question, “What do we do to narrow or eliminate the gap between available organs and those who need them?”

My research indicates that while there are not a plentitude of options to consider there are some and they include:

 

  1. 1.    Mandatory donation (anyone who dies is automatically a donor, no exceptions)
  2. 2.    The LifeSharers approach, (you can only receive an organ if you are a donor)
  3. 3.    Presumed consent (You are automatically a donor unless you opt out)
  4. 4.    Some sort of compensation plan for donors and/or their families.
  5. 5.    A combination of presumed consent and a payment system

 Let us tackle mandatory donation first.  On its surface it sounds harsh and like a product out of an HG wells book.  It is harsh and probably unacceptable because of its dictatorial overtones.  Americans don’t seem to like anything that is mandatory whether it is good for them or not, so mandatory donation is unlikely to receive enthusiastic support.

 Aaron Spital, and James Stacey Taylor (Department of Medicine, Mount Sinai School of Medicine, New York, New York; and Department of Philosophy, College of New Jersey, Ewing, New Jersey) have written a persuasive paper on the subject of mandatory organ donation. http://tinyurl.com/6wavm4b. Their proposal is simple:  

 ”We propose that the requirement for consent for cadaveric organ recovery be eliminated and that whenever a person dies with transplantable organs, these be recovered routinely. Consent for such recovery should be neither required nor sought.”   

The two researchers go on to say,

“We believe that the major problem with our present cadaveric organ procurement system is its absolute requirement for consent. As such, the system’s success depends on altruism and voluntarism. Unfortunately, this approach has proved to be inefficient. Despite tremendous efforts to increase public commitment to posthumous organ donation, exemplified most recently by the US Department of Health and Human Services sponsored Organ Donation Breakthrough Collaborative many families who are asked for permission to recover organs from a recently deceased relative still say no. The result is a tragic syllogism: nonconsent leads to nonprocurement of potentially life-saving organs, and nonprocurement limits the number of people who could have been saved through transplantation; therefore, nonconsent results in loss of life.”  

While it is difficult to disagree from a purely logical standpoint, emotions run high on issues like this and it is unlikely to get approval from the American Public.

The second option listed is the approach where registered donors would be offered organs first, regardless of how ill other patients on the list might be.  In the U.S. there is one organization, LifeSharers, that has promoted that idea for several years and while they have nearly 15,000 members (http://lifesharers.org/) they have had virtually no impact. In order for the concept to work, they would have to sign up just about every single American…that’s not likely to happen and as far as we know, no LifeSharers member has yet been a donor to another LifeSharers member.  To be fair, however, the nation of Israel has adopted a form of the LifeSharers program but it’s still too early to make any assessments on its success or acceptance. 

Most people who object to the “Donors” first concept say it is because it deviates from the practice of offering organs (provided there is a match) to the sickest patient first.  Their program would offer organs to members first and then if there was no match, the organ could go to the sickest person.  Many people object because despite our great national communication system, there are still millions of people who don’t understand the donation/transplantation process, haven’t heard about it, didn’t know you could register to be a donor or, because of a multitude of myths, think they can’t be donors. Despite the honorable efforts by LifeSharers founder Dave Undis, the concept is not being seriously considered by the U.S. transplant community.  Additionally LifeSharers growth has been slow indicating limited acceptance by the public.  You can learn more about LifeSharers at http://www.lifesharers.org/

The third option is presumed consent and if any option is ever approved in the United States or even some of the states, this will likely be the one. Currently under our altruistic program people “opt in” by signing a donor card and having “Donor’ placed on their driver’s license or other official state ID card. Presumed consent is the opposite.  It assumes that everybody wants to be a donor and so you would “Opt out” if you don’t want to be a donor and likely would carry a card that says “Not a donor.”  You can learn more about presumed consent at http://tinyurl.com/7mcjoez.

In countries where presumed consent is in effect, (Austria, Spain, Portugal, Italy, Belgium, Bulgaria, France, Luxembourg, Norway, Denmark, Finland, Sweden, Switzerland, Latvia, Czech Republic, Slovak Republic, Hungary, Slovenia, Poland, Greece, and Singapore) the opt out rate has been around 2% which means that 98% of the eligible population would be organ donors as opposed to under 50% in the United States where we have the opt In program. That’s a big difference.  The great leveler, however, may be that the countries with opt out as their system still ask family members, at the time of the donors death, for their approval. If they refuse the organ is not recovered. 

The most politically sensitive of all the issues is the outright sale of organs.   At this point I know of no serious effort in the U.S. that would change our laws to allow a person to sell his/her organs on the open market.  It is not realistic to think that any U.S. regulatory or government agency would even consider the idea.  Strangely, In Iran of all places, it is legal to sell organs and a healthy kidney retails for about $6,000.

Iran legalized living non-related donation (LNRD) of kidneys in 1988.  The Iranian government regulates and funds the donation/transplantation process and compensates donors for their organs. A third-party group arranges contact between donors and recipients (much like U.S. Organ Procurement Organizations (OPOs). In addition to payment from the government, donors receive free health insurance.  The transplant recipient benefits from highly subsidized immunosuppression support. Iranian law also provides for charitable organizations to pay the cost of transplants for people who can’t afford them.  Here’s an interesting twist, though.  It is illegal for the medical teams or any ‘middleman’ like our OPOs to receive payment.  Within a year of being implemented the number of transplants in Iran almost doubled.

 They system seems to be working in Iran and it certainly could work here…it isn’t as though we aren’t selling things similar to organs.  Currently in the United States it is legal to sell yourself to become a surrogate mother and everyday people are paid for sperm, eggs and hair so why not organs.  The Iran concept is certainly an option but polls continually indicate it is not a very popular one.

 There are some variations on the “Payment” theme that might be attractive to the American people.   We could consider a system that “compensates” rather than pays donors or their families.  For example, a living kidney donor does not have to pay for the surgery to remove the donated kidney nor does that person have to pay for any of the medical care surrounding the operation those costs are absorbed by the recipients insurance coverage.  The donor’s, though, often accrue other expenses like travel to the city in which the recipient lives, lodging, food and time away from work, which could be significant especially if there are any surgical complications.  A very good case could be made for compensation for these expenses.

There are other considerations as well. Dr. Sally Satel a Psychiatrist and a kidney transplant recipient who is also a resident scholar at the American Enterprise Institute has written and spoken extensively on the subject of compensation, “The solution to this lethal paternalism, as I and others have argued, is not to create a direct exchange of cash for kidneys, but for Congress to let donors accept a carefully devised and regulated government benefit — perhaps a tax credit, a contribution to a retirement plan or early access to Medicare.” 

It would not be a huge stretch to extend Dr. Satel’s ideas to families of deceased donors while also covering funeral expenses even providing some help with college tuition for their children, subsidized prescriptions or even subsidized health care insurance. You can read more on Dr. Satel’s thoughts by going to http://tinyurl.com/yabluu3 .

The final option that could be considered is a combination of presumed consent and a form of compensation that follows the lines described by Dr.Satel. 

The point of this blog is to just get people thinking.  The present system isn’t doing the job and never will despite heroic efforts at increasing organ donation, there just aren’t enough donors.  That we must change if we are to stop the dying, is a given.  Determining what that change should be is what is so incredibly difficult. 

-0-

Consider what I’ve written, discuss it with friends, join discussions on Facebook’s Organ Transplant Initiative and comment in the space provided here.  When you have decided what you think is the best solution, you should contact your elected representative or U.S. Senator and let them know your feelings.  Change has to begin somewhere, why not with you?

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or  positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our two brand new video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

Also…there  is more information on this blog site about other donation/transplantation issues.  Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater  our clout with decision makers.

A Life Needs Saving Right Now. Will You Help?


Most often I write about transplants that almost everyone has heard of like heart, lung, kidney, liver and pancreas.  Today is different though. This is about how a new discovery that removes then replaces  some of a patient’s adult stem cells back to the patient and stop, even reverse the effects of Multiple Sclerosis (MS).  Studies indicate this is an amazing breakthrough.  The same procedure is being studied for use with other diseases as well.

This blog is about Emily Lori Cameron a cancer survivor who now has Multiple Sclerosis (MS) which presents her with new challenges every day.  Each day she asks herself, “Will I be able to speak clearly, will my thoughts be clear, will I be able to walk, use my hands or even know where I am and what I am doing?”   Medicare has approved a new procedure for Lori but she must raise $42,000 to pay her share of the cost.  More about that in a bit but first a little about MS.

Multiple Sclerosis is a terrible disease.  In effect the immune system attacks the protective lining around nerves, shreds it and causes communication between brain, nerves and body to become tangled and ineffective.   For example, the brain might send a message to the legs to begin walking but along the way the message gets garbled and what the legs receive is a command to relax so you fall down.  Up until the last couple of years  standard treatment which includes drugs and some physical therapy only delays the inevitable. It does not stop the progression of the disease so it certainly can’t reverse it.

Now there is a new procedure that uses one’s own adult stem cells to not only stop the disease in its tracks but to even reverse many of the existing symptoms.   This new procedure is approved by Medicare and initial studies have indicated that it is very effective, some have even called it a cure for Multiple Sclerosis.   I can’t tell you exactly how this works but apparently they will withdraw from Lori a certain amount of her adult stem cells and store them for a short while. Then she will undergo chemotherapy that will destroy the old immune system. When that is done the original adult stem cells withdrawn from Lori’s body will be injected into her again to create a new uncontaminated immune system. Initial studies indicate success rates in the high 90 percent range. Here’s a link to tell you more http://www.northwestern.edu/newscenter/stories/2009/01/burtms.html

So far the new treatment is approved for use in the early stages of MS so it is entirely possible that if Lori’s condition gets considerably worse, which is entirely possible, she could be removed from the approved list.  Lori’s sister has already experienced the treatment and is doing wonderfully well.  There is an urgency to Lori’s condition because we must, must, must raise the money as soon as possible so there is no chance she will be removed from the transplant list.

Just today I posted a new video on YouTube, it’s only 9 minutes long and effectively tells Lori’s story and why your donation is so critical and must be done so quickly.  You can find it at http://www.youtube.com/watch?v=KrBJoCdIKto.  Or to be even faster you can just go directly to the highly respected National Transplant Assistance Fund (NTAF) and donate directly.  Lori has been approved by NTAF and is registered there www.ntafund.org/contribute/ Secure credit card: 800-642-8399.   You can look her up under the name Emily Lori.

This is probably the most urgent appeal I have ever made.  Lori is a nurse and a very compassionate human being.  She has sacrificed a great deal in order to help others, never asking for anything for herself but now the situation is becoming desperate.  We simply must raise $42,000.  That’s a lot of money but when that’s all it takes to save a human life it should not be an insurmountable obstacle.  Please dig deep…forsake the Latte for a few days, or a beer, or a pack of cigarettes or that sweater you really wnted and send the money to Lori instead.  If we can do that Lori will have the financial support she needs very quickly.  Can you stand by and watch someone die?  I think not…send what you can 50 cents, a dollar, ten dollars…all of it will add up and we can save this precious human life.

Please view another of our recent videos, “Thank You From the Bottom of my Donor’s heart” on You
Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4  This video was produced to promote organ donation so it is free and no permission is needed for it’s use. 

Also…there  is more information on this blog site about other donation/transplantation issues. We would love to have you join our Facebook grou[, Organ Transplant Initiative The more members we get the greater  our clout with decision makers.

Please  comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or  positively affect over 60 lives. Some of those lives may be people you know and love.

Waiting for a Kidney — The Jay Robare Story


Jay Robare of Florida  designed the Save the Arizona 98 poster. Jay, is waiting for a kidney transplant. I offer these stories in order to get people to join the Save the Arizona 98 movement.  In case you missed it Arizona first promised then denied 98 of its pre-approved citizens that Medicaid would pay for their organ transplants.  These people will die without the procedure. 

“Save the Arizona 98” is a two fold program.  1) to work to reverse the decision to disallow Medicaid payment for transplants and 2) to raise money for the transplants in case the decision is not reversed.  If the decision is reversed the money raised can go to other transplant patients in need.  Please read my blogs about the issue and use the links provided below  to join our group. Here’s Jay’s story in his own words.

Jay Robare’s story
Waiting for a Kidney

By the time that I was approved for Medicare, I had gone through all my savings and my limited insurance coverage. I had to quit working because my endurance was gone and because I was not working, I could not afford my apartment anymore and I had to start living with others that helped me out. I lost all my furniture and most of my art equipment.

I finally got disability insurance and was qualified for Medicare but not Medicaid since I was making too much money from disability; I got enough to pay rent and had some money for paper products, which costs a lot. I have to dry my hands on paper towels to stay sterile.

I was blessed with $200 in food stamps last year but that has been decreased too; I am out of food by the third week of the month. I keep asking for rides to the various food banks but people are too busy. I am not the only one going through this; most people just can’t understand the magnitude of what we are going through in our lives and in our bodies. I know everyone is having problems for I hear that al the time but when I got sick and started working to get on the waiting list, all my doctors and nurses treated me like I was given a special gift which it is…the gift of life but many people would rather worry about their financial or relationship problem that they will outlive. We won’t outlive our problems, they are literary killing us.

I didn’t even talk about having to do dialysis every night. The type of dialysis that I do is called Peritoneal Dialysis where I store 2,500 milliliters of sugar saline solution for 2 and a half hour cycles 4 times which is all carbohydrates. I have gained 30 Lbs and I look very well fed; my fried Dirk said I looked like I had a beer belly…my last beer was a Heineken last Christmas. One nice thing about PD instead of hemo dialysis is that I have no liquid restraints. On hemo, I could only have 60 Oz a day or I would risk cramping and THAT was a bitch. Cramps formed in muscles that I thought I never had and the pain was so bad it made me yell out for Jesus…made my tech laugh at me.

Speaking of techs, I had clowns that would not listen to me and do the treatment their own way ending up hurting me. For you on Hemo, THIS IS YOUR TREATMENT AND YOUR BODY, don’t take any crap from these people; make sure that your nurse knows and the director knows that you do not want this person touching you again. Another thing that I like about PD is that it is robbing my body of potassium and this lets me eat things that hemo would never let me eat like bananas, mashed potatoes, spinach, hummus, vegetables and fruits. I do have to take something called a binder every time that I eat something. This medicine absorbs all the phosphorus in the food. The binder can be nasty at times, it is very dry and tastes like I am eating chalk. The chalk does a good job but sometimes it is difficult to take. The meds are a chewable but I think they are coming out with a powder soon.

Another med that I have to take because of PD and a bad parathyroid, caused by ESKD is a drug called Zemplar and Sensipar. Both keep my calcium land my PTH levels down. The only problem is that Sensipar has made me nauseous for the last 4 years; I have been throwing up every time I took this drug for 7-8 months. I guess my body has had enough. The doctors, dietitians and I have been playing games for years. I have finally decided to have a perthyroidectomy. After this surgery, I will need to start taking calcium supplements, including eating more pizza and lasagna…LOL I

I get extremely tired sometimes during the day from either walking to the bus stop and going to Publix to get some noodles or walking from the bus stop to my Davita dialysis clinic to get labs done every Monday or Tuesday; I need to send a vile of blood to my transplant hospital every week so they can keep an aye on my health and changes in my DNA.

Last month I had weird liver numbers and they ordered a full set of tests including a liver biopsy which scared me. My local doctors were thinking that I had a liver disease which stored too much copper in my system; they called it Wilson’s disease. Before I got the biopsy, I thought that I was going to have to get a liver transplant as well as a new kidney…I was a wreck! The day of the biopsy came and I wanted to get knocked out but before I knew it, I herd a clink and it was done. I worried for a week but the results came back and I was clean, no Wilson’s disease. Within a week Ann, my transplant coordinator took me off hold and I was back on the waiting list.

I met Bob Aronson about 3 months ago on Facebook. I used to read all his stuff and I, being a troublemaker, would contradict the man. I soon learned that the guy not only knew his stuff but he was a good writer too, we buried the axe and became friends.

This thing with the Arizona 98 has got me drawing again; I used to be so bummed out about not having a life, I gave up drawing but thanks to Betsy, one of my very good friends and Bob, I am drawing caricatures and designing flyers again.

Life is tough sometimes but with my friends, my faith in God and His son Jesus and now that I am drawing again, I can think I can make it through the storm until I get my kidney. I hope this has helped someone.

Don’t forget the Arizona 98 campaign.  there is more information on this blogsite and you can offer futher support by visiting www.savethearizona98.com.  You can also visit and join my Facebook site, ORGAN Transplant Initiative http://www.facebook.com/group.php?gid=152655364765710  OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ . 

 The more members we get the greater our impact on increasing life saving organ donation

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 60 lives.  Some of those lives may be people you know and love.

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