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What Happens If and When Obamacare is Repealed


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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 If ACA is repealed you will get far less coverage, but you can be sure the insurance companies don’t reduce their rates by a single dime.

If ACA is repealed everyone will feel it, even the very wealthy.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. 

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What You Need To Know About Your Liver and The Transplant Process


By Bob Aronson

cartoonThe liver is an incredibly important organ and the only one in the human body that can regenerate itself.  It is second only in size to the skin (yes the skin is an organ) and has been described as boomerang shaped.  Virtually every nutrient we consume passes through the liver so it can be processed and turned into a different biochemical form for use by other organs.

Located just below the rib cage in the upper right side of your abdomen the liver has three main functions.  It helps in digestion makes proteins and helps eliminate toxic substances.the liver

The liver is the only organ in the body that can easily replace damaged cells, but if enough cells are lost, the liver may not be able to meet the needs of the body.

The liver is like a very complex factory.  Included in its many functions are:          http://www.medicinenet.com/liver_anatomy_and_function/images-quizzes/index.htm

  • Production of bile that is required in the digestion of food, in particular fats;
  • Storing of the extra glucose or sugar as glycogen, and then converting it back into glucose when the body needs it for energy;
  • Production of blood clotting factors;
  • Production of amino acids (the building blocks for making proteins), including those used to help fight infection;
  • The processing and storage of iron necessary for red blood cell production;
  • Manufacture of cholesterol and other chemicals required for fat transport;
  • Conversion of waste products of body metabolism into urea that is excreted in the urine; and
  • Metabolizing medications into their active ingredient in the body.
  • Cirrhosis is a term that describes permanent scarring of the liver. In cirrhosis, the normal liver cells are replaced by scar tissue that cannot perform any liver function.
  • Acute liver failure may or may not be reversible, meaning that on occasion, there is a treatable cause and the liver may be able to recover and resume its normal functions.

The Liver can be affected by any one of a number of diseases.  Click on the item of interest in the list below for a complete explanation.

The Liver Disease Information Center provides information on a variety of topics related to liver health and liver diseases

liver disease. http://www.liverfoundation.org/abouttheliver/info/

How does alcohol affect the liver? (From the American Liver Foundation)  http://www.liverfoundation.org/abouttheliver/info/alcohol/

Alcohol can damage or destroy liver cells.

liver disease stagesThe liver breaks down alcohol so it can be removed from your body. Your liver can become injured or seriously damaged if you drink more alcohol than it can process.

What are the different types of alcohol-related liver disease?

There are three main types of alcohol-related liver disease: alcoholic fatty liver disease, alcoholic hepatitis, and alcoholic cirrhosis.

Alcoholic fatty liver disease
Alcoholic fatty liver disease results from the deposition of fat in liver cells. It is the earliest stage of alcohol-related liver disease. There are usually no symptoms. If symptoms do occur, they may include fatigue, weakness, and discomfort localized to the right upper abdomen. Liver enzymes may be elevated, however tests of liver function are often normal. Many heavy drinkers have fatty liver disease. Alcoholic fatty liver disease may be reversible with abstinence of alcohol.

Alcoholic hepatitis
Alcoholic hepatitis is characterized by fat deposition in liver cells, inflammation and mild scarring of the liver. Symptoms may include loss of appetite, nausea, vomiting, abdominal pain, fever and jaundice. Liver enzymes are elevated and tests of liver function may be abnormal. Up to 35 percent of heavy drinkers develop alcoholic hepatitis and of these 55% already have cirrhosis.

Alcoholic hepatitis can be mild or severe. Mild alcoholic hepatitis may be reversed with abstinence. Severe alcoholic hepatitis may occur suddenly and lead to serious complications including liver failure and death.

Alcoholic cirrhosis
Alcoholic cirrhosis, the most advanced type of alcohol induced liver injury is characterized by severe scarring and disruption of the normal structure of the liver — hard scar tissue replaces soft healthy tissue. Between 10 and 20 percent of heavy drinkers develop cirrhosis. Symptoms of cirrhosis may be similar to those of severe alcoholic hepatitis. Cirrhosis is the most advanced type of alcohol-related liver disease and is not reversed with abstinence. However, abstinence may improve the symptoms and signs of liver disease and prevent further damage

The Liver Transplant

Liver transplants are performed only for patients with end-stage liver disease for whom standard medical and surgical therapies have failed. Conditions that can lead to liver transplantation include: transplant(http://www.barnesjewish.org/conditions-leading-to-liver-transplant)

Liver transplants are the second most common transplants after kidneys.  They require that the blood type and body size of the donor match the person receiving the new organ. There are more  6,000 liver transplants are performed each year in the United States. The surgery usually takes between four and twelve hours and most patients can expect a hospital stay of up to three weeks following surgery. . .

Essential Information For The Transplant Patient

Most transplant centers function in pretty much the same manner, but Johns Hopkins Medical Center in Baltimore, Maryland offers one of the best summaries of what the transplant patient can expect.  http://www.hopkinsmedicine.org/healthlibrary/test_procedures/gastroenterology/liver_transplantation_procedure_92,P07698/

Risks of the procedure

As with any surgery, complications can occur. Some complications from liver transplantation may include, but are not limited to, the following:

  • Bleeding
  • Infection
  • Blockage of the blood vessels to the new liver
  • Leakage of bile or blockage of bile ducts
  • Initial lack of function of new liver

The new liver may not function for a brief time after the transplant. The new liver may also be rejected. Rejection is a normal reaction of the body to a foreign object or tissue. When a new liver is transplanted into a recipient’s body, the immune system reacts to what it perceives as a threat and attacks the new organ, not realizing that the transplanted liver is beneficial. To allow the organ to survive in a new body, medications must be taken to trick the immune system into accepting the transplant and not attacking it as a foreign object.

Contraindications for liver transplantation include, but are not limited to, the following:

  • Current or recurring infection that cannot be treated effectively
  • Metastatic cancer. This is cancer that has spread from its primary location to one or more additional locations in the body.
  • Severe cardiac or other medical problems preventing the ability to tolerate the surgical procedure
  • Serious conditions other than liver disease that would not improve after transplantation
  • Noncompliance with treatment regimen
  • Alcohol consumption

There may be other risks depending on your specific medical condition. Be sure to discuss any concerns with your doctor prior to the procedure.

Before the procedure

In order to receive a liver from an organ donor who has died (cadaver), a recipient must be placed on a waiting list of the United Network for Organ Sharing (UNOS). Extensive testing must be done before an individual can be placed on the transplant list.

Because of the wide range of information necessary to determine eligibility for transplant, the evaluation process is carried out by a transplant team. The team includes a transplant surgeon, a transplant hepatologist (doctor specializing in the treatment of the liver), one or more transplant nurses, a social worker, and a psychiatrist or psychologist. Additional team members may include a dietitian, a chaplain, and/or an anesthesiologist.

Components of the transplant evaluation process include, but are not limited to, the following:

  • Psychological and social evaluation. Psychological and social issues involved in organ transplantation, such as stress, financial issues, and support by family and/or significant others are assessed. These issues can significantly impact the outcome of a transplant.
  • Blood tests. Blood tests are performed to help determine a good donor match, to assess your priority on the donor list, and to help improve the chances that the donor organ will not be rejected.
  • Diagnostic tests. Diagnostic tests may be performed to assess your liver as well as your overall health status. These tests may include X-rays, ultrasound procedures, liver biopsy, and dental examinations. Women may receive a Pap test, gynecology evaluation, and a mammogram.

The transplant team will consider all information from interviews, your medical history, physical examination, and diagnostic tests in determining your eligibility for liver transplantation.

Once you have been accepted as a transplant candidate, you will be placed on the UNOS list. Candidates in most urgent need of a transplant are given highest priority when a donor liver becomes available based on UNOS guidelines. When a donor organ becomes available, you will be notified and told to come to the hospital immediately.

If you are to receive a section of liver from a living family member (living-related transplant), the transplant may be performed at a planned time. The potential donor must have a compatible blood type and be in good health. A psychological test will be conducted to ensure the donor is comfortable with the decision.

The following steps will precede the transplant:

  • Your doctor will explain the procedure to you and offer you the opportunity to ask any questions about the procedure.
  • You will be asked to sign a consent form that gives your permission to do the surgery. Read the form carefully and ask questions if something is not clear.
  • For a planned living transplant, you should fast for eight hours before the operation, generally after midnight. In the case of a cadaver organ transplant, you should begin to fast once you are notified that a liver has become available.
  • You may receive a sedative prior to the procedure to help you relax.
  • Based on your medical condition, your doctor may request other specific preparation.

During the procedure

Liver transplantation requires a stay in a hospital. Procedures may vary depending on your condition and your doctor’s practices.

Generally, a liver transplant follows this process:

  • You will be asked to remove your clothing and given a gown to wear.
  • An intravenous (IV) line will be started in your arm or hand. Additional catheters will be inserted in your neck and wrist to monitor the status of your heart and blood pressure, as well as for obtaining blood samples. Alternate sites for the additional catheters include the subclavian (under the collarbone) area and the groin.
  • You will be positioned on the operating table, lying on your back.
  • If there is excessive hair at the surgical site, it may be clipped off.
  • A catheter will be inserted into your bladder to drain urine.
  • After you are sedated, the anesthesiologist will insert a tube into your lungs so that your breathing can be controlled with a ventilator. The anesthesiologist will continuously monitor your heart rate, blood pressure, breathing, and blood oxygen level during the surgery.
  • The skin over the surgical site will be cleansed with an antiseptic solution.
  • The doctor will make a slanting incision just under the ribs on both sides of the abdomen. The incision will extend straight up for a short distance over the breast bone.
  • The doctor will carefully separate the diseased liver from the surrounding organs and structures.
  • The attached arteries and veins will be clamped to stop blood flow into the diseased liver.
  • Depending on several factors, including the type of transplant being performed (whole liver versus a portion of liver), different surgical techniques may be used to remove the diseased liver and implant the donor liver or portion of the liver.
  • The diseased liver will be removed after it has been cut off from the blood vessels.
  • The doctor will visually inspect the donor liver or portion of liver prior to implanting it.
  • The donor liver will be attached to the blood vessels. Blood flow to the new liver will be established and then checked for bleeding at the suture lines.
  • The new liver will be connected to the bile ducts.
  • The incision will be closed with stitches or surgical staples.
  • A drain may be placed in the incision site to reduce swelling.
  • A sterile bandage or dressing will be applied.

After the procedure In the hospital

After the surgery you may be taken to the recovery room before being taken to the intensive care unit (ICU) to be closely monitored for several days. Alternately, you may be taken directly to the ICU from the operating room. You will be connected to monitors that will constantly display your EKG tracing, blood pressure, other pressure readings, breathing rate, and your oxygen level. Liver transplant surgery requires an in-hospital stay of seven to 14 days, or longer.recovery

You will most likely have a tube in your throat so that your breathing can be assisted with a ventilator until you are stable enough to breathe on your own. The breathing tube may remain in place for a few hours up to several days, depending on your situation.

You may have a thin plastic tube inserted through your nose into your stomach to remove air that you swallow. The tube will be removed when your bowels resume normal function. You will not be able to eat or drink until the tube is removed.

Blood samples will be taken frequently to monitor the status of the new liver, as well as other body functions, such as the kidneys, lungs, and blood system.

You may be on special IV drips to help your blood pressure and your heart and to control any problems with bleeding. As your condition stabilizes, these drips will be gradually weaned down and turned off as tolerated.

Once the breathing and stomach tubes have been removed and your condition has stabilized, you may start liquids to drink. Your diet may be gradually advanced to more solid foods as tolerated.

Your immunosuppression (antirejection) medications will be closely monitored to make sure you are receiving the optimum dose and the best combination of medications.

When your doctor feels you are ready, you will be moved from the ICU to a room on a regular nursing unit or transplant unit. Your recovery will continue to progress here. Your activity will be gradually increased as you get out of bed and walk around for longer periods of time. Your diet will be advanced to solid foods as tolerated.

Nurses, pharmacists, dietitians, physical therapists, and other members of the transplant team will teach you how to take care of yourself once you are discharged from the hospital.

At home

Once you are home, it will be important to keep the surgical area clean and dry. Your doctor will give you specific bathing instructions. The stitches or surgical staples will be removed during a follow-up office visit, if they were not removed before leaving the hospital.

You should not drive until your doctor tells you to. Other activity restrictions may apply.

Notify your doctor to report any of the following:

  • This may be a sign of rejection or infection.
  • Redness, swelling, or bleeding or other drainage from the incision site
  • Increase in pain around the incision site. This may be a sign of infection or rejection.
  • Vomiting and/or diarrhea

Your doctor may give you additional or alternate instructions after the procedure, depending on your particular situation.

What is done to prevent rejection?

To allow the transplanted liver to survive in a new body, you will be given medications for the rest of your rejectionlife to fight rejection. Each person may react differently to medications, and each transplant team has preferences for different medications.

New antirejection medications are continually being developed and approved. Doctors tailor medication regimes to meet the needs of each individual patient.

Usually several antirejection medications are given initially. The doses of these medications may change frequently, depending on your response. Because antirejection medications affect the immune system, people who receive a transplant will be at higher risk for infections. A balance must be maintained between preventing rejection and making you very susceptible to infection.

Some of the infections you will be especially susceptible to include oral yeast infection (thrush), herpes, and respiratory viruses. You should avoid contact with crowds and anyone who has an infection for the first few months after your surgery.

The following are the most common symptoms of rejection. However, each individual may experience symptoms differently. Symptoms may include, but are not limited to, the following:

  • Fever
  • A yellowing of the skin and eyes due to bile pigments in the blood.
  • Dark urine
  • Itching
  • Abdominal swelling or tenderness
  • Fatigue or irritability
  • Headache
  • Nausea

The symptoms of rejection may resemble other medical conditions or problems. Consult your transplant teaoncerns you have. Frequent visits to and contact with the transplant team are essential.

Organ transplants are expensive and the cost goes well beyond the surgery itself.  If you are told you need a transplant and are sent to a transplant center for evaluation you can bet one of the first questions you will be asked is, “Do you have the financial resources to pay for your transplant?”

According to the National Foundation for Transplants http://www.transplants.org/faq/how-much-does-transplant-cost the average cost of a liver transplant and first year expenses in the United States is $575,000.

The Mayo Clinic developed this helpful list of questions that will help you develop the answer to that question. http://www.mayoclinic.org/departments-centers/transplant-center/liver-transplant/choosing-mayo-clinic/costs-insurance-information

Insurance information

Before your transplant, it’s important that you work closely with your insurance company to understand your benefit plan. You’ll be responsible for any of your transplant and medical care costs not covered by your insurance company.costs

You may want to ask your insurance company several questions regarding your transplant expenses, including:

  • What is the specific coverage of my plan? What are my deductibles, coinsurance, copayments, lifetime maximum amount and annual maximum amounts for both medical care and transplant services?
  • Does my plan have a pre-existing or waiting period clause? If so, what is the time frame? Can this be waived?
  • Does my plan include pharmacy coverage? If so, will my plan cover my current medications and immunosuppressant medications?
  • Does my plan require any special approvals for evaluation or transplant? How long does the approval process take once submitted to insurance?
  • Does my plan cover my transportation and lodging expenses during my transplant care?
  • Does my current insurance require enrollment in Medicare when eligible?
  • Does my insurance follow Medicare Coordination of Benefits guidelines?
  • How will my current coverage change after enrolling in Medicare? Will my plan become a supplemental or secondary plan?

If your plan is a Medicare supplement, ask questions including:

  • Does my plan follow Medicare guidelines?
  • Does my plan cover Medicare Part A and B deductible and coinsurance?
  • Does my plan have a pre-existing or waiting period? If so, what is the time frame?
  • Does my plan offer an option for Medicare Part D coverage?

Other expenses

Please plan for other expenses that may occur related to your transplant, which may include follow-up medical appointments, long-term medications, caregiver expenses, travel, parking, lodging and other expenses.

Financial Aid

If you need an organ transplant, but don’t have the financial resources to pay for it you should first work with the transplant center social worker to see what is available. There are a number of resources for which you may qualify.  Just click on this link for the complete list and explanation of services.  http://www.transplantliving.org/before-the-transplant/financing-a-transplant/directory/

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.

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.

Chiropractic Manipulation — What is it and Does It Work?


By Bob Aronson

aching back cartoon

When I was growing up in Chisholm, Minnesota my dad swore that a chiropractor did more for his aching back than anyone else.  Dad was a meat cutter (he despised the term “Butcher” because he butchered nothing) and carried quarters of beef from the truck into his supermarket meat cooler.  Those things are heavy, bulky and very hard to handle and as a result he suffered back problems all his life.  Sometimes he could barely get out of bed he hurt so badly.  When that happened he would call Dr. Cole who, like all doctors then, made house calls.

My mom had an old fashioned, very heavy, super sturdy all wood ironing board set up in the living room and that’s whaironing boardt Doc Cole would use as a treatment bed.  Dad would lie face down on that old ironing board and Doc Cole would begin doing whatever manipulation Chiropractors do.  I don’t remember a time when it didn’t work.  Dad always felt better and was back at work the next day, but the pain always returned.  That’s the sum total of my experience with Chiropractors.  I have never been to see one or been in the care of a Chiropractor nor do I know anyone who has.

Here is the definition of the treatment as provided by the American Chiropractic Association (ACA).   Chiropractic is a health care profession that focuses on disorders of the musculoskeletal system and the nervous system, and the effects of these disorders on general health.  Chiropractic care is used most often to treat neuromusculoskeletal complaints, including but not limited to back pain, neck pain, pain in the joints of the arms or legs, and headaches.

logoDoctors of Chiropractic – often referred to as chiropractors or chiropractic physicians – practice a drug-free, hands-on approach to health care that includes patient examination, diagnosis and treatment. Chiropractors have broad diagnostic skills and are also trained to recommend therapeutic and rehabilitative exercises, as well as to provide nutritional, dietary and lifestyle counseling (there is much more to the definition. You can read it here http://www.acatoday.org/level2_css.cfm?T1ID=13&T2ID=61

There is no shortage of definitions of the practice so “Cherry Picking” a few can be misleading but from what I can find, traditional medical science is becoming more accepting of the practice in recent years, but still seems to stop short of an endorsement.  Here is the definition of Chiropractic according to Medicine Net dot com. http://www.medterms.com/script/main/art.asp?articlekey=2706

Chiropractic: A system of diagnosis and treatment based on the concept that the nervous system coordinates all of the body’s functions, and that disease results from a lack of normal nerve function. Chiropractic employs manipulation and adjustment of body structures, such as the spinal column, so that pressure on nerves coming from the spinal cord due to displacement (subluxation) of a vertebral body may be relieved. Practitioners believe that misalignment and nerve pressure can cause problems not only in the local area, but also at some distance from it. Chiropractic treatment appears to be effective for muscle spasms of the back and neck, tension headaches, and some sorts of leg pain. It may or may not be useful for other ailments.

Not all chiropractors are alike in their practice. The International Chiropractors Association believes that patients should be treated by spinal manipulation alone while the American Chiropractors Association advocate a multidisciplinary approach that combines spinal adjustment with other modalities such as physical therapy, psychological counseling, and dietary measures. For some years the American Medical Association (AMA) opposed chiropractic because of what it termed a “rigid adherence to an irrational, unscientific approach to disease.” However, Congress amended the Medicare Act in 1972 to include benefits for chiropractic services and in 1978 the AMA modified its position on chiropractic.

So, now that we have defined terms the question is, “When should I choose a chiropractor to treat a condition, and which conditions can they successfully treat?”  The answer to that question depends entirely on who you talk to.  Even Chiropractors differ with one another on exactly what conditions they can and can’t treat.

Preston H. Long is a licensed Arizona Chiropractor who practiced for almost 30 years.  Be warned, his assessment of the Preston long book coverChiropractic profession is quite negative.

Long has testified at about 200 trials, performed more than 10,000 chiropractic case evaluations, and served as a consultant to several law enforcement agencies. He is also an associate professor at Bryan University, where he teaches in the master’s program in applied health informatics.  What follows is just a half dozen bullet points from a blog he wrote titled, “20 Things Most Chiropractors Won’t Tell You.”(I Bob Aronson selected only the first six points and edited them for brevity) you can read the entire unedited version here http://edzardernst.com/2013/10/twenty-things-most-chiropractors-wont-tell-you/

Have you ever consulted a chiropractor? Are you thinking about seeing one? Do you care whether your tax and health-care dollars are spent on worthless treatment? If your answer to any of these questions is yes, there are certain things you should know.

 1. Chiropractic theory and practice are not based on the body of knowledge related to health, disease, and health care that has been widely accepted by the scientific community.

Most chiropractors believe that spinal problems, which they call “subluxations,” cause ill health and that fixing them by “adjusting” the spine will promote and restore health. The extent of this belief varies from chiropractor to chiropractor. Some believe that subluxations are the primary cause of ill health; others consider them an underlying cause. Only a small percentage (including me) reject these notions and align their beliefs and practices with those of the science-based medical community. The ramifications and consequences of subluxation theory will be discussed in detail throughout this book.

 2. Many chiropractors promise too much.

The most common forms of treatment administered by chiropractors are spinal manipulation and passive physiotherapy measures such as heat, ultrasound, massage, and electrical muscle stimulation. These modalities can be useful in managing certain problems of muscles and bones, but they have little, if any, use against the vast majority of diseases. But chiropractors who believe that “subluxations” cause ill health claim that spinal adjustments promote general health and enable patients to recover from a wide range of diseases. Some have a hand out that improperly relates “subluxations” to a wide range of ailments that spinal adjustments supposedly can help. Some charts of this type have listed more than 100 diseases and conditions, including allergies, appendicitis, anemia, crossed eyes, deafness, gallbladder problems, hernias, and pneumonia.

3. Our education is vastly inferior to that of medical doctors.

I rarely encountered sick patients in my school clinic. Most of my “patients” were friends, students, and an occasional person who presented to the student clinic for inexpensive chiropractic care. Most had nothing really wrong with them. In order to graduate, chiropractic college students are required to treat a minimum number of people. To reach their number, some resort to paying people (including prostitutes) to visit them at the college’s clinic.

4. Our legitimate scope is actually very narrow.

Appropriate chiropractic treatment is relevant only to a narrow range of ailments, nearly all related to musculoskeletal problems. But some chiropractors assert that they can influence the course of nearly everything. Some even offer adjustments to farm animals and family pets.

 5. Very little of what chiropractors do has been studied.

Although chiropractic has been around since 1895,  little of what we do meets the scientific standard through solid research. Chiropractic apologists try to sound scientific to counter their detractors, but very little research actually supports what chiropractors do.

6. Unless your diagnosis is obvious, it’s best to get diagnosed elsewhere.

During my work as an independent examiner, I have encountered many patients whose chiropractor missed readily apparent diagnoses and rendered inappropriate treatment for long periods of time. Chiropractors lack the depth of training available to medical doctors. For that reason, except for minor injuries, it is usually better to seek medical diagnosis first.

Obviously the previous report is pretty damning but the author’s views are not universally shared.  The problem with finding positive reports about the Chiropractic profession is that there are very few traditional double blind placebo studies.  Double blind studies are the “Gold Standard” in medicine.  Most of the supporting evidence for Chiropractic medicine is of the testimonial variety otherwise known as “Anecdotal” evidence. Often you will see ads that suggest 9 out of 10 who tried something got relief and while that sounds good, it is anecdotal, not double blind and that’s why Chiropractors are suspect in the eyes of the medical profession, even though Medical Doctors will on occasion for specific ailments send their patients to Chiropractors.

Here’s an evaluation of the top ten Chiropractic studies of 2013…it is not positive because, the author says, the studies were not really studies. http://www.sciencebasedmedicine.org/top-10-chiropractic-studies-of-2013/

web md logoThe Medical Profession Does Recognize that Chiropractic Manipulation Can Help.

So, what about the good side of the profession? Where’s the evidence that Chiropractic manipulation of the spine actually has lasting benefits?

I searched for a long time and the best non anecdotal defense I could find for the Chiropractic profession was in Web MD. You can read all of it here, but note that the endorsement is strictly for back pain. http://www.webmd.com/pain-management/guide/chiropractic-pain-relief

Among people seeking back pain relief alternatives, most choose chiropractic treatment. About 22 million Americans visit chiropractors annually. Of these, 7.7 million, or 35%, are seeking relief from back pain from various causes, including accidents, sports injuries, and muscle strains. Other complaints include pain in the neck, arms, and legs, and headaches.

Learn The Truth About Back Pain Causes and Treatments

What Is Chiropractic?                                       ,

Chiropractors use hands-on spinal manipulation and other alternative treatments, the theory being that proper alignment of the body’s musculoskeletal structure, particularly the spine, will enable the body to heal itself without surgery or medication. Manipulation is used to restore mobility to joints restricted by tissue injury caused by a traumatic event, such as falling, or repetitive stress, such as sitting without proper back support.

Chiropractic is primarily used as a pain relief alternative for muscles, joints, bones, and connective tissue, such as cartilage, ligaments, and tendons. It is sometimes used in conjunction with conventional medical treatment.

The initials “DC” identify a chiropractor, whose education typically includes an undergraduate degree plus four years of chiropractic college.

What Does Chiropractic for Back Pain Involve?

A chiropractor first takes a medical history, performs a physical examination, and may use lab tests or diagnostic imaging to determine if treatment is appropriate for your back pain.

The treatment plan may involve one or more manual adjustments in which the doctor manipulates the joints, using a controlled, sudden force to improve range and quality of motion. Many chiropractors also incorporate nutritional counseling and exercise/rehabilitation into the treatment plan. The goals of chiropractic care include the restoration of function and prevention of injury in addition to back pain relief.

What Are the Benefits and Risks of Chiropractic Care?

Spinal manipulation and chiropractic care is generally considered a safe, effective treatment for acute low back pain, the type of sudden injury that results from moving furniture or getting tackled. Acute back pain, which is more common than chronic pain, lasts no more than six weeks and typically gets better on its own.

Research has also shown chiropractic to be helpful in treating neck pain and headaches. In addition, osteoarthritis and fibromyalgia may respond to the moderate pressure used both by chiropractors and practitioners of deep tissue massage.

Studies have not confirmed the effectiveness of prolotherapy or sclerotherapy for pain relief, used by some chiropractors, osteopaths, and medical doctors, to treat chronic back pain, the type of pain that may come on suddenly or gradually and lasts more than three months. The therapy involves injections such as sugar water or anesthetic in hopes of strengthening the ligaments in the back.

People who have osteoporosis, spinal cord compression, or inflammatory arthritis, or who take blood-thinning medications should not undergo spinal manipulation. In addition, patients with a history of cancer should first obtain clearance from their medical doctor before undergoing spinal manipulation.

All treatment is based on an accurate diagnosis of your back pain. The chiropractor should be well informed regarding your medical history, including ongoing medical conditions, current medications, traumatic/surgical history, and lifestyle factors. Although rare, there have been cases in which treatment worsened a herniated or slipped disc, or neck manipulation resulted in stroke or spinal cord injury. To be safe, always inform your primary health care provider whenever you use chiropractic or other pain relief alternatives.

On my OTI Facebook group I asked for individual experiences with chiropractors and got very few, most were positive but general in nature offering few details.

Other Non-Traditional Remedies

There are other non-traditional remedies for back pain that we have not mentioned here.  Below you will find several that were listed in “About dot com. “ For the full list of 15 options click on this link. http://altmedicine.about.com/od/chronicpain/a/back_pain.htm

 Acupuncture

A 2008 study published in Spine found “strong evidence that acupuncture can be a useful supplement to other forms of accupunctureconventional therapy” for low back pain. After analyzing 23 clinical trials with a total of 6,359 patients, the study authors also found “moderate evidence that acupuncture is more effective than no treatment” in relief of back pain. The authors note that more research is needed before acupuncture can be recommended over conventional therapies for back pain.

 

Just how does acupuncture work? According totraditional Chinese medicine, pain results from blocked energy along energy pathways of the body, which are unblocked when acupuncture needles are inserted along these invisible pathways. Acupuncture may release natural pain-relieving opioids, send signals to the sympathetic nervous system, and release neurochemicals and hormones.

 See Also: Using Acupuncture to Help Relieve Chronic Pain | Sciatica – Causes, Symptoms, and Natural Treatments | What is Trigger Point Therapy?

Massage Therapy

massage therapyIn a 2009 research review published in Spine, researchers reviewed 13 clinical trials on the use of massage in treatment of back pain. The study authors concluded that massage “might be beneficial for patients with subacute and chronic nonspecific low back pain, especially when combined with exercises and education.” Noting that more research is needed to confirm this conclusion, the authors call for further studies that might help determine whether massage is a cost-effective treatment for low back pain.

Massage therapy may also alleviate anxiety and depression associated with chronic pain. It is the most popular natural therapy for low back pain during pregnancy.

The Alexander Technique

Alexander Technique is a type of therapy that teaches people to improve their posture and eliminate bad habits such as slouching, which can lead to pain, muscle tension, and decreased mobility.

 There is strong scientific support for the effectiveness of Alexander Technique lessons in treatment of chronic back pain, according to a research review published in the International Journal of Clinical Practice in 2012. The review included one well-designed, well-conducted clinical trial demonstrating that Alexander Technique lessons led to significant long-term reductions in back pain and incapacity caused by chronic back pain. These results were broadly supported by a smaller, earlier clinical trial testing the use of Alexander Technique lessons in treatment of chronic back pain.

You can learn Alexander technique in private sessions or group classes. A typical session lasts about 45 minutes. During that time, the instructor notes the way you carry yourself and coaches you with verbal instruction and gentle touch.

Hypnotherapy

Also referred to as “hypnosis,” hypnotherapy is a mind-body technique that involves entering a trance-like state of deep relaxation and concentration. When undergoing hypnotherapy, patients are thought to be more open to suggestion. As such, hypnotherapy is often used to effect change in behaviors thought to contribute to health problems (including chronic pain).

Preliminary research suggests that hypnotherapy may be of some use in treatment of low back pain. For instance, a pilot study published in the International Journal of Clinical and Experimental Hypnosis found that a four-session hypnosis program (combined with a psychological education program) significantly reduced pain intensity and led to improvements in mood among patients with chronic low back pain.

 Balneotherapy

One of the oldest therapies for pain relief, balneotherapy is a form of hydrotherapy that involves bathing in mineral water or warm water.

For a 2006 report published in Rheumatology, investigators analyzed the available research on the use of balneotherapy in treatment of low back pain. Looking at five clinical trial, the report’s authors found “encouraging evidence” suggesting that balneotherapy may be effective for treating patients with low back pain. Noting that supporting data are scarce, the authors call for larger-scale trials on balneotherapy and low back pain.

Dead Sea salts and other sulfur-containing bath salts can be found in spas, health food stores, and online. However, people with heart conditions should not use balneotherapy unless under the supervision of their primary care provider.

Meditation

An ancient mind-body practice, meditation has been found to increase pain tolerance and promote management of chronic pain in a number of small studies. In addition, a number of preliminary studies have focused specifically on the use of meditation in management of low back pain. A 2008 study published in Pain, for example, found that an eight-week meditation program led to an improvement of pain acceptance and physical function in patients with chronic low back pain. The study included 37 older adults, with members meditating an average of 4.3 days a week for an average of 31.6 minutes a day.

 Although it’s not known how meditation might help relieve pain, it’s thought that the practice’s ability to induce physical and mental relaxation may help keep chronic stress from aggravating chronic pain conditions.

One of the most commonly practiced and well-studied forms of meditation is mindfulness meditation.

Tai Chi

Tai chi is an ancient martial art that involves slow, graceful movements and incorporates meditation and deep breathingTai chi. Thought to reduce stress, tai chi has been found to benefit people with chronic pain in a number of small studies.

 Although research on the use of tai chi in treatment of back pain is somewhat limited, there’s some evidence that practicing tai chi may help alleviate back pain to some degree. The available science includes a 2011 study published in Arthritis Care & Research, which found that a 10-week tai chi program reduced pain and improved functioning in people with long-term low back pain symptoms. The study involved 160 adults with chronic low back pain, half of whom participated in 40-minute-long tai chi sessions 18 times over the 10-week period.

 Music Therapy

Music therapy is a low-cost natural therapy that may reduce some of the stress of chronic pain in conjunction with other treatment. Studies find that it may reduce the disability, anxiety, and depression associated with chronic pain.

 A 2005 study published in Annals of Physical and Rehabilitation Medicine evaluated the influence of music therapy in hospitalized patients with chronic back pain. Researchers randomized 65 patients to receive, on alternate months, physical therapy plus four music therapy sessions or physical therapy alone and found that music significantly reduced disability, anxiety, and depression

 Conclusion

It is difficult at best to arrive at a conclusion about the effectiveness of Chiropractic manipulation for two reasons. 1) there are very few real scientific studies and 2) The members of the profession don’t even seem to agree on just when and on which conditions Chiropractors can offer lasting relief.  I can only conclude with this thought.  At one time Chiropractors were ridiculed by the medical profession and not covered by health insurance.  Now, that has changed and the profession seems to be enjoying a degree of legitimacy It has never before had.

If you will take anecdotal evidence as scientific proof then Chiropractors are very effective.  If you prefer to make a decision based on scientific studies…well, the jury may still be out.

The bottom line is quite simple.  If you have been to a Chiropractor and the visit or visits have resulted in relief from what ails you, then keep going.  You are the best judge of what’s right for you.

 

Bob AronsonBob 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.

Can’t Afford an Organ/Tissue Transplant? Where To Get Financial Aid


Introduction by Bob Aronson

Information provided by Transplant Living

and

The National Marrow Donor Program

cartoonBecause there is a shortage of organs the odds of getting a transplant are not good, There are a lot of factors that influence whether any one person will get an available organ and one of them is the ability to pay.  Unfortunately our system is heavily weighted toward those who either have insurance or an independent ability to finance the surgery and the aftercare. A transplant and the aftercare and medication for the first year after the surgery can cost as much as a million dollars.  Sometimes even those with the ability to pay need some assistance. 

 unostransplant living

Transplant Living is a project of the United Network for Organ Sharing (UNOS), a nonprofit organization that maintains the national Organ Procurement and Transplantation Network (OPTN) under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services.

UNOS is the private government contractor that facilities all organ transplants in the United States.  The information in his blog is copies from their website which provides a wealth of information about the entire donation/transplantation process.  It is one of the most comprehensive resources available.  Bob’s Newheart thanks them for compiling this information and for its willingness to share it with you via our blog. 

Funding Sources

Most transplant programs have social workers and financial coordinators who can help you with the financial details of your transplant. Depending on the structure at your center, one or both will help you develop a strategy.

Common funding sources to help with the costs of transplants include:

 Note: This information is only a brief summary and is not intended to provide complete information. Ask your transplant financial team and your insurance provider or employee benefits officer for the latest information or help.

Private Health Insurance

You or your family may have health insurance coverage through an employer or a personal policy. Although many insurance companies offer optional coverage for transplant costs, the terms and benefits of insurance vary widely. Read your policy carefully and contact your insurance company if you have questions about how much of your costs they will pay, including your lab tests, medications and follow-up care after you leave the hospital.

Some insurance questions to consider:

  • Is my transplant center in-network with my insurance company?
  • If my transplant center is out-of network, do I have an out-of-network benefit for transplant?
  • What deductibles will apply?
  • What are my co-payments for doctor visits, hospitalizations and medications?
  • Does my plan require prior authorization?
  • Who needs to get prior authorization?

Regardless of how much your insurance covers, you are responsible for any costs not paid by your insurance, unless you have made other arrangements. If you are responsible for paying any or all of your insurance premiums, be sure to pay them on time so that you do not lose your insurance.

Transplant center social workers and financial coordinators can also help you with the information you need. They can contact your insurance company to check on your benefits and explain your coverage in more detail.

 

Experimental and Investigative Procedures

If your transplant center asks you to be involved in any experimental procedures or studies, be sure to ask your center or insurance company if your insurance policy will cover the payment. It is important to know that you do not have to agree to be involved in any experimental procedures or investigational studies. If you still have questions, contact your employer’s benefits office or your state insurance commissioner.

Tips

  • Keep copies of all medical bills, insurance forms and payments (or canceled checks).
  • Ask your insurance company about pre-certification or using a specific provider.
  • Follow the rules set forth by your insurance company so that your benefits will not be decreased.
  • Always keep a log (who you talked to, date and time and questions answered) of your conversations with anyone in the hospital’s billing office or your insurance company.
  • Make sure to keep your transplant center informed about your insurance, especially if you have more than one insurance company.
  • For more helpful tips, see the Financial Q&A.

COBRA Extended Employer Group Coverage

If you are insured by an employer group health plan and you must leave your job or reduce your work hours, you may qualify for extended coverage through COBRA (Consolidated Omnibus Budget Reconciliation Act of 1985). This federal law requires certain group health plans to extend coverage for 18 to 36 months after benefits end. This requirement is limited to companies employing 20 or more people. You pay the full cost of the premiums for the group health plan. Learn more by contacting your employer’s benefits office or visit the federal Department of Labor Web site >

Health Insurance Marketplace

Also known as the health insurance “exchange,” the marketplace is a set of government-regulated and standardized health care plans in the United States. Open enrollment starts October 1, 2013. Coverage starts as soon as January 1, 2014. Learn more at www.healthcare.gov >

Medicare

Medicare is a federal health insurance program available to people who are 65 or older, disabled or have end stage renal disease (ESRD).

Medicare, like most private insurance plans, does not always pay 100% of your medical expenses. In most cases, it pays hospitals and health providers according to a fixed fee schedule, which may be less than the actual cost. You must pay deductibles and other expenses. Medicare currently offers coverage for transplant of:

  • kidneys
  • kidney-pancreas
  • pancreas, either after a kidney transplant or for certain indications

If you already have Medicare due to age or disability, Medicare also covers other transplants:

  • heart, in certain circumstances
  • lung
  • heart-lung
  • liver, including transplants necessitated by hepatocellular carcinoma (HCC)
  • intestines

To receive full Medicare benefits for a transplant, you must go to a Medicare-approved transplant program. These programs meet Medicare criteria for the number of transplants they perform and the quality of patient outcomes.

If you have questions about Medicare eligibility, benefits, or transplant programs, contact your local Social Security office, or Medicare at 800-633-4227 or www.medicare.gov.

Medicare Prescription Drug Plans

Medicare Part D covers costs for prescription drugs. To get this coverage you must choose and join a Medicare drug plan. For more information call (800) MEDICARE ([800] 633-4227)/ TTY: (877) 486-2048 or visit www.medicare.gov (click on Medicare Basics >Part D).

MediGap Plans

Many people on Medicare also choose to buy a private “Medigap” policy to pay for costs not covered by Medicare. Check with a local insurance agent or go to www.medicare.gov (click on Resource Locator>Medigap).

State Health Insurance Assistance Program

The State Health Insurance Assistance Program (SHIP) is a national program that offers one-on-one counseling and assistance to people with Medicare and their families. Your transplant social worker or financial coordinator can provide information on your states SHIP program, or learn more now >

Medicaid

Medicaid is a federal and state government health insurance program for certain low-income individuals. Each state determines criteria for:

  • eligibility
  • benefits
  • reimbursement rates

Most Medicaid programs only cover transplants performed in their state, unless there are no centers that can transplant that organ. For more information, contact your local human services department or the financial coordinator at your transplant center.

Charitable Organizations

Charitable organizations offer a range of support, from providing information about diseases, organs and transplants, to encouraging research into these diseases and treatments.

Also, although it is very unlikely that one organization can cover all of the costs for an individual patient, some organizations provide limited financial assistance through grants and direct funding. For example, an organization may only be able to help with direct transplant costs, food and lodging or medication costs.

Advocacy Organizations

Advocacy organizations advise transplant patients on financial matters. If you agree to a financial arrangement with an advocacy organization, it is important to make sure that the funds are available in a manner that suits your needs. You may even want legal assistance in reviewing a written agreement before signing. Your bank can also help you review the arrangement.

Every advocacy organization should be able to provide supporting information and background documentation to prove they are legally recognized to help those in need. Brochures and other background information should never serve as substitutes for these documents. Ask advocacy organizations to provide you with copies of the following documents:

  • a current federal or state certification as a charitable, non-profit organization
  • a current by-laws, constitution and/or articles of incorporation
  • a financial statement for the preceding year, preferably one that
  • an audit report from an independent organization
  • references

Fundraising Campaigns

Public fundraising is often used to help cover transplant expenses not paid by medical insurance. Before you begin seeking donations, it may be necessary to check with your city/county governments, legal advisor or transplant team about the many legal and financial laws and guidelines.

If you decide to use public fundraising as a way to cover your expenses, you may want to contact local newspapers, radio or television stations to help support your cause. In addition, try to enlist the support of local merchants and other sponsors to promote or contribute to your events. Your friends, neighbors, religious groups, local chapters of volunteer or service groups and other community groups may also be able to help.

It is also very important to understand that the funds you raise only be used for your transplant-related expenses and donated money sometimes has to be counted as taxable income. In cases in which money must be counted as income, you may lose your Medicaid eligibility.

TRICARE (formerly Champus) and Veterans Administration

Government funding for families of active-duty, retired, or deceased military personnel may be available through TRICARE. TRICARE standard may share the cost of most organ transplants and combinations. TRICARE also covers living donor kidney, liver, and lung transplants. Patients must receive pre-authorization from the TRICARE medical director and meet TRICARE selection criteria. Pre-authorization is based on a narrative summary submitted by the attending transplant physician. For more information about TRICARE, contact the health benefits advisor at your nearest military health care facility, call the TRICARE Benefits Service Branch at (303) 676-3526 or learn more now >
 

The National Marrow Donor Program is also a resource for information on where to get financial assistance.  They offer this advice.

be the match marrow dnor programTransplant insurance coverage.  These items may not be covered by your insurance.  Check to be sure.

You or someone you know might need an organ/tissue transplant you must show an ability to pay before you will be accepted by most transplant centers.  Most people rely on insurance but insurance policies differ from one company to the next.  Be sure about what your policy covers, talk to your plans benefits manager or to the hospital social worker to get a clear idea of what is covered.

It is very likely that the following items are NOT COVERED by your health insurance company.  This information was generated by the National Marrow Donor Program.  http://tinyurl.com/b8pb4s4 

You may want to ask if the following items are covered by your specific health insurance plan: 

  • Testing to find a matched unrelated or related donor
  • Donor costs
  • Transplants for a rare diagnosis
  • Travel and lodging expenses to and from the transplant center for patient and/or caregiver
  • Food costs while staying near transplant center
  • Parking costs
  • Prescriptions for post-transplant discharge or outpatient medications
  • Office visits coverage
  • Home health care
  • Psychiatric coverage
  • IV injections
  • Clinical trials  
  • Sperm/egg storage
  • Insurance premiums when patient is not employed
  • Fees for post-transplant home preparation (carpet and drapery cleaning, replacing filters on heaters, air conditioning cleaning)
  • Change in cost of living after transplant (different food needs, for example)
  • Child-care costs

If your insurance does not cover all of your costs related to transplant, you may be eligible for Financial Assistance for Transplant Patients.

Financial assistance for transplant patients

Financial assistance resources may be available to you, if your insurance does not cover all of the costs related to your bone marrow or cord blood transplant. Your transplant center social worker will help you find financial aid that is available through Be The Match® and other organizations.

Planning for transplant costs

If insurance does not cover all of the costs related to your bone marrow or cord blood transplant, financial assistance resources may be available to you.

Applying for financial aid programs may include many steps. Your transplant center social worker will help you find financial aid that is available through Be The Match® and other organizations, and help you complete the applications.

Be The Match financial aid programs

Be The Match financial assistance is available for patients who are searching for a donor on the Be The Match Registry®, or who have had a bone marrow or cord blood transplant with a donor from the registry.  Financial assistance from these programs can help you pay for the cost of a donor search and for some post-transplant expenses. Talk with your transplant center financial coordinator to see if you are eligible for these programs.  

*Funds for financial aid programs are available through the generous contributions to Be The Match.

Transplant costs worksheet can help you calculate the transplant costs not covered by insurance.

Search Assistance Funds

Search Assistance Funds can help pay the costs not covered by insurance for searching Be The Match Registry of unrelated adult donors and cord blood units. If you are eligible, Be The Match will notify the transplant center. This allows your donor search process to begin as quickly as possible.

To be eligible:

  • You are searching for an unrelated donor or cord blood unit from the Be The Match Registry.
  • Your transplant center has determined you do not have enough insurance coverage to cover the donor search costs.
  • You must be a U.S. resident.

Transplant Support Assistance Funds

Transplant Support Assistance Funds help pay for some costs during the first 12 months after transplant that are not covered by your insurance. These funds can be helpful with costs related to:

  • Temporary housing, if you and your family or caregiver need to relocate for the transplant.
  • Food for you and your family or caregiver.
  • Parking and gas for ground transportation.
  • Co-pays for prescriptions and clinic visits.

To be eligible:

  • You have had a transplant using an unrelated donor or cord blood unit from the Be The Match Registry.
  • You must be within the first 12 months of your transplant.
  • You meet financial eligibility criteria.
  • You must be a U.S. resident.

Explore BMT Logo

ExploreBMT is a resource to connect you and your family with financial support and information from organizations you can trust.

Other financial aid programs

There are several more financial aid programs available to help you with your transplant costs. Ask your transplant center social worker to help you identify and apply for programs that you may be eligible for, including Be The Match financial aid programs.

Fundraising

Even if you have coverage for transplant, fundraising is a good path to take to assist with costs not covered by insurance, such as prescriptions and temporary housing. It is also a great way for your family and friends to be involved with your care. 

Asking for help is perfectly okay, and you may find that many of your loved ones will step forward to support your fundraising campaign. If you do decide to raise funds, it is best to do it before your transplant, as the money raised will help you budget for your medical expenses.

These organizations can help you plan your fundraising campaign:

Children’s Organ Transplant Association (COTA)

Help HOPE Live (Formerly the National Transplant Assistance Fund (NTAF)

National Foundation for Transplants

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Bob informal 3Bob 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.

 

 

 

 

 

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.

Help Your Caregiver — Get Your Own Glass of Water


When you are very ill or recovering from a serious illness or surgery our caregivers (spouses, partners, friends, relatives) have a most difficult task.  Being a caregiver can be physically and emotionally draining and strange as it may seem the patient may sometimes have to offer care to the caregiver.  Care in the form of consideration and gratitude.  Remember the expression, “When mamma’s happy, everybody’s happy?”  Same goes for caregivers.

As a heart transplant patient with a wife who would do anything for me and did, I can now reflect on my recovery period and easily see the number of mistakes I made as she tried so hard to meet my every need, and take care of the house while running two businesses.  To this day I have no idea how she did it and I will be forever grateful.  My ruminations on the subject led me to write the following advice to others who may be in the same situation now or who could be in the future.

Make it easy on your caregiver if you want to do what’s best for you.

  1. Do as much for yourself as you possibly can. If your physician says you can get up and walk around do it as often as possible. Get your own glass of water.
  2. Learn your meds. Know what they look like, what they do, how often you take them and when they must be refilled and do all of it yourself.  Plan ahead for refills and find a pharmacy that will deliver to you on short notice so no one has to go running after prescriptions at the last minute.  You can do it sitting and you don’t need a caregiver to do it for you.
  3. Know your condition.  When you talk with your doctor or coordinator take notes.  It is your job to know about your health you cannot and should not depend on someone else to “remember what the doctor said.”
  4. Make your own meals but be sure they are nutritious. You either just got a new organ or you are about to get one. Don’t cause further problems by eating and drinking the wrong things.
  5. Only ask your caregiver for things you absolutely can’t do for yourself. If you can’t drive, you may need a ride or the caregiver may have to run errands for you.  If you are on medication that causes some mental confusion or fatigue your caregiver should be involved such as in dealing with legal papers, insurance etc.  But you should take over these responsibilities as soon as you possibly can.
  6.  If you have children, especially young ones, you may not be able to get involved in strenuous activities. The Children need to know this and your caregiver may have to take on some of this responsibility…for awhile.
  7.  Before making any request of your caregiver ask yourself this question, “Am I taking advantage of my caregiver by asking — is this something I can do myself?”
  8. Show gratitude and consideration. Taking care of another person can be emotionally and physically exhausting. Tell that person how grateful you are and ask what you can do to make it easier on them.  Every once in a while, get a glass of water for the caregiver.

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.

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.  

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