Blog Archives

What Happens to You When Obamacare is Repealed


cartoonDonald 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 38 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 because there is no replacement bill on which to report. We will cover that as thoroughly as possible when it happens.

We should remember, too, that President Trump has promised not only to replace the ACA, but to do so almost simultaneously with the repealing of the bill. Recently House Speaker Ryan made the same promise. We should hold them to that.

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 If ACA is repealed you will get far less coverage, but I’ll bet the insurance companies don’t reduce their rates by a single dime.

If ACA is repealed everyone will feel it, even the very wealthy.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 “Tweaking” Medicare and Medicaid. It remains to be seen what that means for Transplant Patients, but this congress is in a cutting mood, so it is unlikely their “Tweaking” will result in anything beneficial to us. 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.

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, and there’s little reason to believe they won’t be, 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. 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.

-0-

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. 

Medicaid and Medicaid Expansion. Where and How to Get it.


medicaid cartoon

By Bob Aronson

I will start this post by saying that you are about to get more information about Medicaid than you wanted or likely have seen in one place before.  I am doing that so that you have to do as little homework as possible.

In order to eliminate confusion the reader should know that as of this writing every U.S. state provides some sort of Medicaid.  When you read stories that a state has opted out of “Expanded Medicaid” under the Affordable Care Act (ACA) that doesn’t mean they have decided not to fund Medicaid at all.  It only means they will not participate in the expanded program offered by the U.S. Government.  It also means that fewer people will be treated for fewer medical problems.

Every state in the union currently has some sort of Medicaid program.  Medicaid is the largest source of funding for medical and health-related services for lomedicaid logow-income people in the United States. It is means-tested that is jointly funded by the state and federal governments and managed by the states, with each state currently having broad leeway to determine who is eligible for its implementation of the program.  Some states are far more generous than others but none are required to participate in the program.

Medicaid recipients must be U.S. citizens or legal permanent residents, and may include low-income adults, their children, and people with certain disabilities.  Poverty alone does not necessarily qualify someone for Medicaid as poverty guidelines differ from state to state.

How to apply for Medicaid.  

Many states offer the ability to apply for Medicaid directly on their websites. These applications can generally take anywhere from a half an hour to an hour to complete. If your state doesn’t have an online application, you may be able to at least access a copy of it online that you can download and fill out at your convenience. If it doesn’t, you will need to take a trip to your local Department of Social Services and request their assistance with filling out your application. In most cases, you’ll have the option of taking the application with you and bringing it back in, or mailing it back in, or you will be seen immediately, if you wish.  More details can be found here http://tinyurl.com/kfg34bv

Do You Qualify for Medicaid?

If the previous link did not answer your questions this link should.   https://www.healthcare.gov/do-i-qualify-for-medicaid/#howmed

Medicaid Then and Now

Prior to Medicaid expansion on the Affordable Care Act (ACA) of 2010 Medicaid was and is administered as a partnership jointly funded by the federal government and the states, with the feds contributing anywhere from 50 percent to 74 percent of expenses (the average nationwide is 57%). For states who sought to provide care to the disadvantaged and others it was a pretty good deal.

ACA expansion greatly increased the federal investment in state programs.  Under the ACA the federal match rate, starts at 100 percent in 2014 and gradually declines starting in 2017 until it reaches 90 percent for 2022 and beyond.

Unfortunately for those who need Medicaid 26 states have chosen not to participate in the expansion.  They have that option because of a U.S. Supreme court decision that upheld all other aspects of the Affordable Care Act except making the expansion mandatory. Again, Medicaid programs are only available to people with low incomes, limited resources, or certain diseases or disabilities

ACA otherwise known as Obamacare has been the subject of a bitter political battle since long before it was passed into law. The Republican controlled U.S. House of Representatives  believes the law is ineffective and unaffordable.  As a result House Republicans not only voted against it they have unsuccessfully tried to repeal the law 40 times.  The great majority of states that have rejected expansion are Republican controlled.

Let us begin with where the states are with regard to Medicaid expansion.   The following states have said yes to the Medicaid expansion:

Arizona, Arkansas, California, Colorado, Connecticut, Delaware, D.C., Hawaii, Illinois, Iowa, Kentucky, Maryland, Massachusetts, Michigan, Minnesota, Nevada, New Jersey, New Mexico, New York, North Dakota, Oregon, Rhode Island, Vermont, Washington, West Virginia

The following states have said no to the Medicaid expansion.

Alabama, Alaska, Florida, Georgia, Idaho, Indiana, Kansas, Louisiana, Maine, Mississippi, Missouri, Montana, Nebraska, New Hampshire, North Carolina, Ohio, Oklahoma, Pennsylvania, South Carolina, South Dakota, Tennessee, Texas, Utah, Virginia, Wisconsin, Wyoming

I wish there was a way to tell readers exactly what to expect for their situation but that just can’t be done because there are so many variables.  Medicaid is a complex and often difficult to understand program.  If you are curious about your eligibility the best we can do is to refer you to links for more information but at least you won’t have to spend time searching for them, we’ve done that for you.  Once you begin your search though, be sure you have plenty of time and hot coffee because you will be doing a bit of studying.

National Public Radio has done a tremendous job of sorting out questions and answers about Medicaid.  Here’s just one of their many “Explainers.”

FAQ: Where Medicaid’s Reach Has Expanded — And Where It Hasn’t

http://tinyurl.com/l5nnxyr

October 11, 2013 3:00 PM

This is one of several explainers to help consumers navigate their health insurance choices under the Affordable Care Act, or as some call it, nprObamacare.  For answers to other common questions you can click here http://tinyurl.com/lwtqtsv Have a question we missed? Send it to www.health.npr.org  We may use it in a future on-air or online segment.

Could I be eligible for Medicaid now?

The Affordable Care Act greatly expanded the number of people who qualify for Medicaid, the state-run health insurance program for people with low incomes. Previously, it was difficult for anyone other than pregnant women, parents and children to qualify. The law expands eligibility in ways that will allow many more people, including single and childless men or women, to qualify.

How do I know if I’m eligible for Medicaid?

The law extends eligibility to all adults under the age of 65 whose modified adjusted gross incomes fall below just under $16,000 for individuals and $32,500 for a family of four.

In states that decided not to participate in the Medicaid expansion, the rules are different and vary from state to state. About half of the states opted out of the Medicaid expansion, which is something that the U.S. Supreme Court gave them permission to do. In those states, the income cutoff to be eligible for Medicaid is generally much lower than what was set in the Affordable Care Act, so fewer people will qualify. And if you’re a childless adult, you’re most likely not eligible in states that rejected the Medicaid expansion.

To find out the income cutoff in your state, you can check out the tables here http://tinyurl.com/n55suho

Or, just try signing up for coverage at your health insurance exchange. The exchange will calculate if you are eligible for Medicaid in your state, and if you are, direct you to the proper state agency to get signed up. http://tinyurl.com/meyyzgs

What if my state didn’t expand Medicaid?

If your income is too high to qualify for Medicaid under your state’s rules, you can still try enrolling at an insurance exchange. You may not qualify for subsidies, though. The subsidies are for people whose income falls between 100 percent of the ($11,490 for an individual) and 400 percent ($45,960).

If you make too much to qualify for Medicaid but too little to qualify for subsidies on the exchange, then you are exempted from the new mandate to carry health insurance. http://aspe.hhs.gov/poverty/13poverty.cfm

If that’s your situation — you’re poor and still have no health insurance — you can still seek health care with other safety net providers, such as federal community health centers and free clinics run by local nonprofits.

If I am sick and unable to work and have no income, can I get a plan on an exchange for free?

If you are disabled and have no income, you most likely won’t be shopping for insurance on the exchanges. Rather, you may qualify for Medicaid. In , if you qualify to collect Supplemental Security Income, or SSI, you also qualify for Medicaid. For more information on Medicaid eligibility and links to your state’s Medicaid office, click here http://tinyurl.com/7mevcmw

See other Frequently Asked Questions on Medicaid and the Affordable Care Act:

While I would very much like to be able to provide details about every state’s Medicaid program neither time nor space allow for that undertaking.  I will, by way of this post, try to provide some general guidelines but it will be up to you to determine exactly what your state offers.

Although the federal government sets up general guidelines, each state runs its own Medicaid program. States establish what health care services are covered and which groups of people get coverage. As a result, Medicaid programs vary a great deal from state to state.

Keep in mind, too, that even if you can’t get Medicaid benefits, your child still may be eligible.

More Frequently Asked Questions About Medicaid

Q.        How Much Do Medicaid Programs Cost?

A.        The cost of a Medicaid program depends on the state. Some programs require you to make a small co-payment for medical services in addition to what Medicaid pays.

Q.        What Does Medicaid Cover?

A.        In general, Medicaid programs offer more comprehensive medical coverage than Medicare. They usually include hospital stays, visits to doctors, tests, some home medical care, and more. Again, the specifics vary from state to state.

Q.        What Else Do I Need to Know About Medicaid?

A.        Some people qualify for both Medicare and Medicaid programs. They are called “dual eligibles.” In these cases, Medicaid may pay some of your Medicare fees.

  • If you qualify for both Medicare and Medicaid and enroll in a Medicare Prescription Drug Plan, you are eligible for help in paying your drug plan’s monthly premium, deductible, and co-pays.

To learn more about Medicaid programs, visit the U.S. government’s Centers for Medicare and Medicaid Services (CMS) web site. 

Fiscal Impact of the Medicaid Expansion on State Budgets

Medicaid as of September 4, 2013 The Supreme Court ’s decision on National Federation of Independent Business et al v. Sebelius1 upheld all provisions of the Affordable Care Act (ACA) including the individual responsibility requirement, health insurance exchanges and subsidies, and the Medicaid expansion. However, the Court restricted the federal government’s ability to withhold federal Medicaid funds if a state

Emphasis on Primary Care and on Primary Care Physicians

The Affordable Care Act emphasizes primary care and seeks to increase the number of primary care physicians willing to provide services to Medicaid patients. To that end, Medicaid payments to primary care physicians will increase to 100 percent of the Medicare payment rates for the years 2013 and 2014. Current payment rates for primary care physicians under Medicaid vary markedly from state to state, but on average they are 66 percent of Medicare reimbursement rates.

Physicians who will be receiving the higher rates are those engaged in family practice, general internal medicine and pediatric medicine. As with the cost of making more individuals eligible for Medicaid, the federal government will pay 100 percent of the added costs for payments to primary care physicians. Payment rates after 2014, and the division of responsibility between the federal and state governments to pay them, has not been determined.

Additional Information Resources

http://www.medicaid.gov/

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

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

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

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

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

Can’t Afford Your Meds? Here Are Some Resources


By Bob Aronson

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Financial Assistance for Living Donors and Transplant Recipients

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

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

 

Air Care Alliance

1515 East 71st Street, Suite 312

Tulsa, Oklahoma 74136

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

Toll Free Help Line

Number: (888) 260-9707

Email:

mail@aircareall.org

www.aircareall.org

 

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

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

 

American Kidney Fund

6110 Executive Blvd., Suite 1010

Rockville, MD 20852

Phone: (800) 638-8299

Email:

helpline@kidneyfund.org

www.akfinc.org

 

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

 

American Liver Foundation

75 Maiden Lane, Suite 603

New York, NY 10038-4810

Phone: (800) 465-4837,

(800) GOLIVER

Email:

webmail@liverfoundation.org

www.liverfoundation.org

 

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

 

American Organ Transplant Association

3335 Cartwright Road

Missouri City, TX 77459

Contact: Ellen Gordon Woodal

l, Executive Director

Phone: (281) 261-2682

Fax: (281) 499-2315

www.a-o-t-a.org

 

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

Angel Flight

American Medical Support Flight Team

P.O. Box 17467

Memphis, TN 38187-0467

1-877-858-7788 Toll Free

1-901-332-4034 Local

1-901-332-4036 Fax

www.angelflightamerica.org

 

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

 

Children’s Organ Transplant Association

2501 COTA Drive

Bloomington, IN 47403

Phone: (800) 366-2682

Email:

cota@cota.org

www.cota.org

 

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

 

Georgia Transplant Foundation

3125 Presidential Parkway

Suite 230

Atlanta, GA 30340

Phone: (770) 457-3796

Toll-Free: (866) 428-9411

Fax: (770) 457-7916

Contact them online at:

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

 

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

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

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

 

.

National Living Donor Assistance Center (NLDAC)

2461 S. Clark St

reet, Suite 640

Arlington, VA 22202

Phone: 703.414.1600

Fax: 703.414.7874

Email:

NLDAC@livingdonorassistance.org

www.livingdonorassistance.org

 

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

 

Help Hope Live

(formerly the National Transplant Assistance Fund )

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

Toll-free:

800.642.8399

Web:

http://www.helphopelive.org

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

 

Nielsen Organ Transplant Foundation

580 W. 8th St.

Jacksonville, FL 32209

(904) 244-9823

Email:

nielsen@notf.org

www.notf.org

 

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

 

National Foundation for Transplants

1102 Brookfield Road

Suite 200

Memphis, TN 38119

Toll Free: (800) 489-3863

Local: (901) 684-1697

Fax: (901) 684-1128

E-mail:

info@transplants.org

www.transplants.org

 

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

 

Transplant Recipients International Organization, Inc.

2100 M Street, NW, #170-353

Washington, DC 20037-1233

Email:

info@trioweb.org

www.trioweb.org

 

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

 

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

 

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

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

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

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

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

En Espanol

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

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

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

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

 

 

 

 

 

Mobility Scooters A First Time User’s Observations


electric wheelchair

By Bob Aronson

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

En Espanol

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

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

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

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

Obamacare — Your Questions Answered


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

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

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

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

Who We are

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

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

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

A Post-election Consumer’s Guide to Health Reform

By Mary Agnes Carey and Jenny Gold, Kaiser Health News

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

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

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

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

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

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

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

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

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

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

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

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

What other parts of the law are now in place?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Are there more changes ahead for the law?

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

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

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

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

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

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

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

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

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

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

Election 2012 — Senior Citizen Transplants & Healthcare Coverage to Diminish


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stop the Insanity Now!


(The writer, Bob Aronson, got a new heart on  August 21, 2007 at the Mayo Clinic in Jacksonville, Florida.  He has been an outspoken advocate for blood, organ and tissue donation, transplantation and related issues)

Due to several economic and political factors America’s health care safety net is in danger of disintegrating leaving millions of people with only emergency rooms for their primary care 

As the economy worsened the cost of health care and health insurance continued to rise and millions of Americans whether employed or not found themselves with little or no coverage even if their conditions were life threatening.  A good number of these people were critically ill, jobless, had exhausted their financial resources and could only turn to Medicaid for help (Medicaid is partially funded by the U.S. Government but administered by the individual states).

Many officials were elected by promising tax cuts and deficit reduction.  Then, just a few weeks after the last election, their legislatures went into session and members of the bodies knew their promises were still fresh in the minds of voters.  Unlike the federal government the law does not allow states to end the year with a deficit.  So as the budget disparity grew tax increases were considered to be political suicide even if such moves would have helped solve the problem.  That left legislators with only one way to address the state’s deficit — cut programs.

The top revenue eaters in all states are education and Medicaid.  There have been or will be drastic spending cuts in both areas.   While several states like California, New York, Texas and Florida are considering Medicaid cuts, Arizona took the first step by eliminating the program’s coverage of most organ and tissue transplants. The move immediately affected 98 legal pre-approved Arizona citizens who were promised that Medicaid would cover their procedures.  Texas, threatens to go even farther and some powerful people there want to eliminate Medicaid completely

Experts agree that anyone who is approved to be on the transplant list has a life-threatening illness that requires treatment beyond what standard medical procedures and treatments can provide and that means tissue and/or organ transplants which are highly effective but expensive.   A person can only be “listed” if a physician who specializes in their disease is convinced there is no other way to save the patient’s life.  Then, that same expert must convince a hospital transplant committee, also made up of experts, that the patient’s name should be submitted for listing.  At that point the name and condition of the patient is forwarded to the United Network for Organ Sharing (UNOS) in Richmond, Virginia for placement on the national waiting list.  UNOS coordinates all organ and tissue transplants in the United States.  Currently there are over 110,000 people on that list. 

When Arizona decided to break their promise to the 98 patients they knew that without the promised transplants every one of these terminally ill people would die. Two have passed on already and a Phoenix transplant surgeon says as many as 30 more may die in 2011. 

To make matters worse, the legislature and Governor Brewer used outdated and erroneous data to justify the action saying “Transplants are Cadillac options and aren’t very effective anyway.”  The truth is that the only option to a transplant is death; there are no other medical remedies for these patients  and — organ and tissue transplants do work.  Hearts have a 90-95% success rate (this writer is one of them) kidneys have an 85-90% success rate and lung transplants are successful about 75% of the time.  The American Society of Transplant Surgeons, the American Transplantation Society and UNOS have together protested the use of incorrect information and have provided the Governor and the legislature with the latest data which shows beyond a doubt that the procedures are not only successful but save money in the long run.  Governor Brewer and the Legislative leadership has ignored that information and continue to use the same old incorrect data in order to justify their unconscionable actions.  

The Arizona lawmakers insist that the transplant cuts will save $5 million but the state’s own research indicates the figures are lower — $800,000 in 2010 and $1.4 million in 2011.  Governor Brewer has $30 million in discretionary federal stimulus funds that she could use to save these lives.  She says the money is spoken for but won’t say where it’s going.  In the meantime she found $2 million to conduct algae research and another nearly $2 million to fix a roof. 

Steven Daglas a 30-year-old Republican from Illinois with whom I’ve talked studied the Arizona budget carefully and found 26 ways to cover the cost of the transplants without raising taxes and without negatively affecting other programs.  Acting in a respectful, responsible and helpful manner he presented his findings to the Governor.  He, too, has been ignored.

Now Arizona wants to cut almost 300 thousand people from Medicaid which will place a burden on hospital Emergency Rooms that are required by law to treat anyone who comes in, insured or not.  That most certainly will cause a hike in the cost of healthcare and penalize hospitals and patients at the same time.   If you think ER waiting times are long now wait a few months, it will get much worse.

Governor Brewer in a game of smoke and mirrors has stated that she is setting up a fund for critical cases that should help the Arizona 98 get their transplants.  But the fact is this action may make it even less likely because by removing nearly 300 thousand people from Medicaid the fund will be depleted almost immediately and the likelihood of the transplant patients getting the care they need is below minimal.

Unfortunately this is only the beginning.  Other state legislatures are meeting, too and most of them are watching Arizona very carefully to see what the Grand Canyon State is going to do.

I believe, as do many Americans, that allowing the critically ill to die in order to balance a budget or achieve political gains is wrong and criminal in nature.  This is a civil and human rights issue and no one should have the right to decide who lives and who dies.  In the case of Medicaid those who die will be mostly poor who have exhausted all other alternatives.  We can find absolutely no justification for this cruel and unconscionable action.  It must be stopped, you can stop it.  Let your voices be heard.  Join Facebook’s Organ Transplant Initiative (OTI) and/or Dream of Life Coalition (DLC).and become a volunteer to stop this insanity.

On March 5, 2011 The Dream of Life Coalition will hold a rally at the state capitol in Phoenix, Arizona to send a strong message to Arizona about the immorality of denying Medicaid coverage to transplant patients.  It will start at 9 AM at St. Mathew church. Walk with us and show your support.  There’s a hole in the dam and we have an opportunity to patch it.  Can you stand by and do nothing?

Please view our 7 minute video “A Promise Broken” on www.savethearizona98.com.  Also…there is more information on this blog site about other donation/transplantation issues.  We would love to have you join our Facebook pages, Organ Transplant Initiative  and The Dream of Life Coalition  The more members we get the greater our impact on increasing life saving organ donation

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

Give Me Your Tired, Your Poor – and We Will Let Them Die


 (The Author, Bob Aronson, is a heart transplant recipient, former journalist,  former Communications Director for a Minnesota Governor and retired international communications consultant.  He lives in Jacksonville, Florida with his wife Robin)

 

If Medicaid dies so does American morality and compassion.  Due to several economic, political and yes, even some human selfishness factors, America’s health care safety net is in danger of disintegration leaving millions of people with only emergency rooms for their primary care.  Most disturbing is the fact that the great majority of terminally ill patients who depend on life saving organ and tissue transplants, dialysis, radiation and chemo therapy, hospice and other complex surgeries and treatments will simply be sent home to die. It is happening in Arizona and it is likely to happen in many other states as well and but for a committed few is being met with apathy and disdain for those affected. 

 

The danger is imminent but many Americans just don’t seem to care.  If we let this happen America will have lost part of what has made it great, Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore. Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!”   These last few lines in a poem by Emma Lazarus, speak for all eternity the words of compassion for which America is known.  If Medicaid dies so do those words on the Grand Lady in the Harbor that inspired so many millions who came to these shores.

 

As our economy worsened the costs of health care and health insurance continued to rise.  Millions of Americans whether employed or not have found themselves with little or no coverage even if their conditions were life threatening.  A good number of these people were critically ill, jobless, had exhausted their financial resources and could only turn to Medicaid for help (Medicaid is partially funded by the U.S. Government but administered by the individual states)

 

Across the width and breadth of the United States many officials were elected on promises of tax and spending cuts so as budget deficits grew tax increases were out of the question, they were considered political suicide.   Unlike the federal government the law does not allow states to end the year with a deficit.  In every state, legislatures meet shortly after election day so the lawmaker’s immediate top priority was budget slashing — often indiscriminate and cruel in its nature.   

 

The top revenue eaters in all states are education and Medicaid.  While there have been some cuts in education most of the emphasis in the new year has been on Medicaid and the cuts and proposed cuts have been both dramatic and life threatening.  While several states like California, New York and Florida are considering huge Medicaid cuts, Arizona took the first step by eliminating the program’s coverage of most organ and tissue transplants.  The move immediately affected 98  pre-approved Arizona citizens who were promised that Medicaid would cover their procedures. 

 

Experts agree that anyone who is approved to be on the transplant list has a life-threatening disease that requires treatment beyond what standard medical procedures and treatments can provide.  In the great majority of cases that means tissue and/or organ transplants which are highly effective albeit expensive will not be available unless you are insured or very wealthy.   A person can only be “listed” if a physician who specializes in their disease is convinced there is no other way to save the patient’s life.  Then, that same expert must convince a hospital transplant committee, also made up of experts, that the patient’s name should be submitted for listing.  At that point the name and condition of the patient is forwarded to the United Network for Organ Sharing (UNOS) in Richmond, Virginia for placement on the national waiting list.  UNOS coordinates all organ and tissue transplants in the United States.  Currently there are over 110,000 people on that list. 

 

When Arizona decided to break their promise to the 98 patients they knew that without the promised transplants every one of these terminally ill people would die. Two have passed on already and a Phoenix transplant surgeon says as many as 30 more may die in 2011 – and that’s just in Arizona and  just transplant patients.. 

 

To make matters worse, the Arizona legislature and Governor Brewer used outdated and erroneous data to justify the action saying “Transplants are Cadillac options and aren’t very effective anyway.”  The truth is that the only option to a transplant is death; there are no other medical remedies for these patients.  And — organ and tissue transplants do work.  Hearts have a 90-95% success rate (this writer is one of them) kidneys have an 85-90% success rate and lung transplants are successful about 75-80% of the time.  The American Society of Transplant Surgeons, the American Transplantation Society and UNOS have together protested the use of incorrect information and have provided the Governor and the legislature with the latest data which shows beyond a doubt that the procedures are not only successful but save money in the long run. http://www.a-s-t.org/news/new-ast-asts-unos-review-concludes-az-medical-data-shows-eliminated-transplants-work  (You can also go the Website of the American Society of Transplant Surgeons web page and click on the first item, December 9, 2010 Arizona Transplant Cuts Based on Flawed Data http://www.asts.org/thesociety/positionstatements.aspx) Governor Brewer and the Legislative leadership have ignored that information and continue to use the same old incorrect data to justify their inhuman action.  Is this any different from perpetuating a lie?  

 

The Arizona lawmakers insist that the transplant cuts will save $5 million but the state’s own research indicates the figures are lower — $800,000 in 2010 and $1.4 million in 2011.  Governor Brewer has $30 million in discretionary federal stimulus funds that she could use to save these lives.  She says the money is spoken for but won’t say where it’s going.  In the meantime she found $2 million to conduct algae research and another nearly $2 million to fix a roof. 

 

Steven Daglas a 30-year-old Republican from Illinois studied the Arizona budget carefully and found 26 ways to cover the cost of the transplants without raising taxes and without negatively affecting other programs.  Respectfully he offered his findings to Governor Brewer and the legislature.  He, too, has been ignored.

 

Now Arizona wants to cut almost 300 thousand people from Medicaid which will cause a hike in the cost of healthcare and insurance while penalizing hospitals at the same time.  If this legislation is passed and spreads to other states and a flood of patients of Noah’s Ark proportions hits hospital emergency rooms the death toll will mount  into the hundreds of thousands if not millions and health care and insurance costs will rise until only the ultra-rich will be able to afford them.  That’s the scenario friends.  You can deny my hypothesis, you can call it exaggerated and sensationalized but the fact remains that cutting Medicaid to the bone or eliminating it altogether as Texas would like to do, will cause a major financial and health disaster unlike anything America ever seen. 

 

Other state legislatures are meeting now, too, and most of them are watching Arizona very carefully to see what the Grand Canyon State is going to do.  If we allow Arizona to balance its budget by refusing to treat the first 98 critically ill patients and then cutting another 300 thousand from Medicaid roles, the green light will be seen from California to New York and the disaster will have begun.

 

Many of us in Organ Transplant Initiative and other organizations believe that allowing the critically ill to die in order to balance a budget is wrong.  This is a civil and human rights issue and no elected official(s) should have the right to decide who lives and who dies.  In the case of Medicaid those who die will be mostly poor who have exhausted all other alternatives.  We can find absolutely no justification for this cruel and unconscionable action.  Politicians who pander to base selfishness and allow people to die are really no different from the street thug who maims and even kills an innocent citizen for their money.

 

Please view our 7 minute video “A Promise Broken” on www.savethearizona98.com.  Also…there is more information on this blog site about other donation/transplantation issues.  We would love to have you join our Facebook pages, ORGAN Transplant Initiative  and The Dream of Life Coalition  The more members we get the greater our impact on increasing life saving organ donation

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

Save Arizona Lives, Make This Video Viral


The campaign to save the lives of the Arizona citizens who were promised and then denied Medicaid coverage for their terminal illnesses is picking up steam.  Organizations from all over the United States and the world are joining the effort to get the Arizona legislature and Governor Jan Brewer to reverse their inhuman decision. 

Two of our Allies, Transplant Recipients International (TRIO) and The FAIR Foundation have thrown their significant weight behind this effort and they are having a huge impact.  

Visible cracks in the Brewer administration foundation are appearing daily.  Arizona legislative leaders are now saying they want to review the decision, even Governor Brewer has indicated she might, might be willing to discuss the issue but that will only happen if they really feel the pressure.

To this point Governor Brewer has defended her decision by using inaccurate and, in some cases, totally false data but it is being challenged daily by prominent physicians, medical associations and even, the United Network for Organ Sharing (UNOS) which usually steers clear of controversial subjects (UNOS coordinates all organ transplants in the United States). 

All of the Television networks, have been reporting on the issue as have newspapers and radio stations.  Our Video, “A Promise Broken” which was released yesterday January 6, 2011 has been watched by thousands from all over the world but we are just getting started.  We need to continue to build the pressure the Arizona politicians are beginning to feel. 

“A Promise Broken” is a powerful six minute PowerPoint slide show that exposes the misinformation campaign that has resulted in the deaths of two Arizonans already.  You can view this compelling presentation at www.savethearizona98.com  or on You Tube at http://www.youtube.com/watch?v=yq5cGoRMne4  Permission is granted for appropriate use of this production to advance the cause of reversing the Arizona decision to deny transplants. 

On You Tube http://www.youtube.com/watch?v=yq5cGoRMne4 you can find it under “Save the Arizona 98” but because we have little in the way of financial resources we had to upload an evaluation copy created by some free internet software so please be patient as you watch it if it slows down a bit. 

As noted we have no funding to promote this video and we won’t make any from its release because it viewing is free, that’s why we need your help to make it viral.  Please view it and if you like it pass on the URL to others. Post it wherever you can because every time you do we get one step closer to saving lives. 

Because of the Arizona decision to deny organ transplants to Medicaid patients two people have already died.  The longer it takes to change the law, the more deaths we will see.  That’s just not acceptable, so join the cause, and make “A Promise Broken” viral.  Do it now, the lives you save could be someone near and dear to you.  If Arizona gets away with this, it will begin to happen in other states.  The video should become viral…not the program that causes the deaths.

Please help, now.  Your fellow Americans are counting on you. www.savethearizona98.comhttp://www.youtube.com/watch?v=yq5cGoRMne4

If you go to www.savethearizona98.com you’ll find some links on the left side of the page that not only take you to the video but also offer you an opportunity to buy T-shirts and other products (all the profits go to the National Transplant Assistance Fund (NTAF) or there’s a link where you can contribute directly to NTAF and purchase nothing. 

When you click “Play” on “A Promise Broken” let it roll.  The slides will change automatically.  When you’ve finished viewing it you are invited to tell others about it. No permission is needed for it to be used in a manner appropriate to the cause.  Also, we’d appreciate if you returned to Bob’s NewHeart and commented about what you’ve seen.

Please visit and join my Facebook site, ORGAN Transplant Initiative http://www.facebook.com/group.php?gid=152655364765710  OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ . 

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

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

The Arizona 98 — The Full Story


Since October I’ve been leading a national Facebook campaign to save the lives of the 98 Arizonans who were promised, then denied Medicaid coverage for organ transplants by the legislature and governor Jan Brewer. They are only on Medicaid because their conditions have made them too sick to work and too weak to raise the money needed to save their lives. They are powerless, helpless people for whom the Governor has absolutely no compassion. She has not offered any words of sympathy, any support in helping to raise money or even to meet with them. She simply says, “We don’t have the money” and blames so-called Obamacare for the Arizona mess. But, the fact is that the Arizona legislature passed and she signed the bill BEFORE the Obama bill even passed congress.

That isn’t the only mischaracterization the Governor has made. She has received over $1 billion in federal stimulus funds, $30 million of which is discretionary; she can use it any way she wants to. She says all the money is spoken for, but she refuses to tell anyone what she will spend it on, she won’t even talk to the media. Strangely she found $2 million to study algae and another nearly $2 million to repair a roof. Voters even approved nearly $100 million for a spring training facility for the Chicago Cubs. By cutting the Medicaid funds that would have paid for these people’s transplants the state will save between $1.4 and $4.5 million out of a nearly $9 billion budget.

Governor Brewer has fudged on other issues as well. She says transplants don’t work, that they are optional. Well, I can testify that they work and so can thousands of other people. As to it being optional the only option for someone who needs a transplant is death. You cannot be certified to be listed for a transplant unless a physician who specializes in your particular illness convinces a hospital transplant committee that you will die unless you get a transplant. Brewer also says the state still covers liver transplants but that, too, is not true. They Don’t. One of the 98, Francisco Felix, was on the operating table being prepped for a liver transplant donated by a relative when the order came that the state wouldn’t pay for it. He was awakened, sent home and his relative’s liver was given to someone else. Can you think of anything more cruel?

Several well known, highly respected transplant experts have contacted the governor telling her that the information she used to make the decision was outdated, erroneous and incomplete but she has refused to acknowledge them and continues to use the same wrong information as she did just recently on Fox news with Greta Van Susterin.

The Arizona Legislature meets on January 10 to reconsider the action and while Republicans have an overwhelming majority some GOP leaders have suggested that perhaps they were wrong and should reverse their previous decision, so there is a good chance of reversal even though the Governor refuses to change her mind. That means that we must put pressure on the legislature to pass a veto-proof bill that will return the transplant coverage to the Arizona 98. All we are asking for is that the state honor its promise.

I would ask you to do these things.

1) Write to the Arizona Senate Majority leader and the Speaker of the House urging them to restore Medicaid transplant coverage (I have no names for these people because they will be selected when the session begins).

2) Get on Governor Brewer’s Facebook page and using logic and diplomacy, urge her to change her mind.

3) Join my Facebook group, Organ Transplant Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 The more members we have the more clout we’ll have with elected officials and other decision makers, so far we have nearly 800 members.

4) Spread the word. Tell everyone you know about the tragedy unfolding in Arizona and ask them to take action by contacting elected officials but also by telling their friends through the use of social networks, blogs, email and whatever else they can think of. .

5) If the legislature doesn’t change its mind the 98 will still need transplants so I have started a fund drive, “Save the Arizona 98” through the highly respected National Transplant Assistance Fund (NTAF). If you go to www.savethearizona98.com you will find a link where you can purchase T-shirts and other products with the Save the Arizona 98 graphic on them. ALL profits will go to the NTAF and there are no administrative fees or expenses charged for our service. The Link also offers an opportunity to donate directly to NTAF and designate exactly who you want to help. When you enter the site you will see a large “Save The Arizona 98” sign. You have permission to download, distribute and use it in any way that will help save these lives.

Please help in this effort. Right now Arizona is the only state in the union that has denied organ transplants for Medicaid patients but other states aren’t far behind. We must send them a message that Americans won’t stand for letting our neighbors die.

If you believe in keeping promises, helping the sick, equal treatment under the law and preserving life, this cause is just right for you.

The only obligation any government has is to protect its people. It is in the U.S. Declaration of Independence and in the Preamble to the constitution. Will you help?

Thank you from the bottom of my donor’s heart.

Bob Aronson

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

Also…visit and join my Facebook site, ORGAN Transplant Initiative http://www.facebook.com/group.php?gid=152655364765710  OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ . 

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

Arizona –The Rich Get Richer, The Poor Get Poorer and the Sick Get Dead.


 NEWS RELEASE   December 14, 2010

For more information contact Bob Aronson bob@baronson.org

In early October, 2010 Bob Aronson, heart transplant recipient and founder of Organ Transplant Initiative (OTI), started a nationwide drive to reverse the Arizona decision that denies Medicaid patients vital organ transplants.  http://www.facebook.com/#!/group.php?gid=152655364765710   He also has a very popular blog site devoted to donation/transplant issues with recent posts aimed at the Arizona issue https://bobsnewheart.wordpress.com.

 “Everyone on the transplant list is dying,” says Aronson, “And Governor Brewer’s claim that transplants are an optional treatment is totally without foundation.  The only option to a transplant is death. I know, I would have been dead three years ago if I had not received a new heart.” 

Aronson a former Minnesota Governor’s Press Secretary and now living in Jacksonville, Florida says, “I understand how serious budget problems can be, but you don’t solve them by killing your citizens.”  

Organ Transplant Initiative has rallied people from all over the country with their “Save the Arizona 98” campaign.  Additionally the group has a website www.savethearizona98.com where people or organizations can buy T-shirts and other products bearing the slogan, “Save the Arizona 98.”  All profits go to the National Transplant Assistance Fund and there are no administrative fees or expenses charged to the proceeds.  The site also offers the option of donating directly to the fund and designating the specific person or persons you want to help.

“Governor Brewer blames so-called Obamacare for the Medicaid problems,” states Aronson, “But Arizona approved cutting transplants before the Obama bill passed congress.”  He notes that, “While Americans have a guarantee of Life, Liberty and the Pursuit of Happiness, Arizona has opted to deny life and liberty in favor of the Pursuit of Mexicans, because,” he says, “The Governor has diverted millions of Federal stimulus and other dollars, to her border protection program.  Those dollars could have been used to save and enhance lives.  They weren’t.

Permission is granted to copy and use this release in any appropriate manner to help save the Arizona 98. 

From Bob Aronson

If you would like to donate money to help these Arizona patients pay for their transplants, should organs become available, you can do so through the National Transplant Assistance Fund (NTAF).  You can either call 1-800-642-8399 or make your donation on-line at http://www.ntafund.org/contribute/  

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

Also…visit and join my Facebook site, ORGAN Transplant Initiative http://www.facebook.com/group.php?gid=152655364765710  OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ . 

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

Organ Transplants Work, Donations Are Up, Hope is Real!


In Arizona there are 98 patients who have been approved for organ transplants but because of cuts in state run Medicaid there is no money available to pay for the procedures.  There has been a lot of misinformation about the effectiveness of transplants and some have even suggested that there isn’t much hope for most of these patients anyway.

I contacted my friends at the United Network for Organ Sharing (UNOS), the national organization that coordinates all transplants in America, and asked them to write a guest blog on the facts about donation and transplantation.  Jim Gleason, a heart transplant recipient, activist, UNOS committee member and National President of Transplant Recipients International Organization (TRIO) responded with compassion, facts and hope

Jim Gleason, UNOS

Sixteen years ago, with heart meds running at their fullest and the heart still failing, I waited for any news of an available heart to replace my failing one. I felt no fear of death as each day seemed to draw nearer to that possibility, never giving up hope and continuing to pray each night “…Thy will be done.”  Imagine my emotions when 6am the next morning, Heather, my transplant coordinator nurse, called with those awaited words, “Mr. Gleason, I think we have a heart for you!”  Even today when I share that part of the amazing story, those emotions well up bringing tears to my eyes, causing me to pause before continuing for so many audiences over these many years.  Yes, that did become my “new heart” and I’ve been enjoying a fulfilled and productive life ever since, thanks to that generous donor family decision.

Viewing developments from my 16 years post heart transplant life history, I see major improvements in every direction.  Technology is keeping us alive longer, making the wait for a transplant more successful and raising the quality of life post-transplant dramatically.  I offer this vision of hope to you from years of personal observation and life experience.  Allow me to share some examples.

Reports of improvements in donated organ preservation will dramatically affect where those organs can travel to the neediest patients.  Through preservation pumps, a donated organ’s condition is being improved, before they are implanted, resulting in both healthier transplants and allowing previously discarded organs to be made viable for transplant.  I see healthier recipients coming back to fulfilled and productive lives than ever before, especially in today’s lung recipients, as one example, where in days past, this was almost a rarity and too often a short-lived success.   Heart patients are waiting for their transplants at home, often supported by miniature-implanted pumps that can keep them alive, sometimes without even a human heart, for months and beyond the one-year milestone that seemed impossible just years ago, now almost commonplace. 

Recently our support group heard a presentation about “growing transplantable human bladders” from the patient’s own cells.  When we asked how soon this might be a viable option, imagine our surprise in hearing that over a dozen had already been grown and implanted in children as part of the yearlong trial to get government approval, and that such bladders were grown in just 6 to 8 weeks!   Now even the invasive biopsy used to test for possible heart rejection after transplant has been supplemented by a simple blood draw.  Through complex DNA testing that test yields a “risk of rejection” metric that can be used to reduce the previously large number of very expensive biopsies ($60k each I heard recently) with these $3k blood tests.  Now that’s progress and hope for us all.

OPO’s (i.e, the organ procurement organizations that work with UNOS to insure organs get to the right patients) and transplant center staffs are teaming up to share best practices, increasing donation rates,  patient survival and improving the overall patient experience, before, during and after the transplant.  The lifesaving but very expensive immuno-suppressant meds that years ago were given in heavy dosages with long-term possible toxic side effects on the kidney and liver, for example, are today proving effective in lesser amounts.  As one very successful and long-term transplant surgeon explained candidly to our support group, “We are discovering that the body itself can deal with those rejection challenges supported by far lesser amounts of those meds.”  Or as another patient, twenty-four years out from an 1986 heart transplant, heard from his transplant doctor, “We really didn’t have enough experience back when you were transplanted – often making “seat of the pants” decisions based on what seemed to be working so far.  Today we have so much more to work with in proven practices that are shared world-wide to the benefit of patients everywhere.” 

When my own kidney ten years post-transplant showed early signs of weakening due to those meds, we had two new alternative drugs that I could be switched to that resulted in improving that kidney function before a transplant was needed.  Today, as I find myself on Medicaid supported insurance, even the high cost of those brand name drugs, a major financial challenge for many post-transplant, are replaced with equally effective low cost co-pay generics.  As we live longer and healthier post-transplant lives, we enjoy the increasing benefits of such developments, both in quality of care and in cost of that care, as evidenced by these modern drug improvements.  At a recent heart transplant dinner celebration of life, our local organization of 800 heart recipients, honored eight who were over 20 years out with their “new” hearts – and I stress that was just our “local” area support group!  We were all given hope and inspiration by their example, and again, that was from the early era of very challenging heart transplants.  How much more we can expect today with today’s protocols, much improved over the past half century in hearts, as just one example.

My personal post heart transplant experience has included seven years of working on three different UNOS committees.  Know that there are over 20 UNOS committees supported by more than 700 volunteers of all backgrounds – yes, even candidate and recipient patients like you and me – working to make the process constantly better, keeping up with the ever improving developments in medical and computer/communications technology.  All serve without pay, dedicating their time and talent to help you get that transplant in the shortest and healthiest manner possible.  In seeing such dedication and hard work, I come away knowing that our process is in good hands and will continue to improve each and every year in a transparent environment that is open to anyone who cares to take the time to see it through the UNOS web site or even personally visits them in Richmond, Va.  “Been there, done that!” and I can tell you it’s worth the trip.

The organ allocation process is constantly under review and revision by these UNOS committees, all done open to public preview and comment.  Currently, a concept known as “net benefit” is used as a basis for ongoing changes in allocation policy to insure that scarce organs are going to patients who will receive most long term life-years benefit from the right gifted organ.  Strict rules and constant oversight insure that organs go to those in most urgent need, not just those who waited the longest.  We may see a critical patient sometimes getting a liver transplant, as one example, with short wait times. This may seem unfair to another who, less ill, can still wait for their transplant while that other life is saved “just in time.”  It’s a balancing act that is constantly simulated, reviewed and improved, with the results then compared to the expected outcomes for confirmation or correction within those committees.

We see and are concerned that the national waiting list is constantly growing.  But realize that this is due to the success of organ and tissue transplantation and people surviving longer with now older bodies that need replacement organs.  Patients are finding out about transplant success as an option to their condition – all good news.  Not a day goes by that we don’t read or hear about the results of increased living donations.   Now that the “paired donation” process is allowing a living donor and their unmatched recipient to share kidneys among a chain of (most recently I saw 14…) individuals, the waiting list benefits as those transplanted are removed in that chaining process.   Yes, I feel amazed and hopeful in seeing progress like that.

And also there is good news in that organs donated and organs transplanted have increased significantly over the past decade through the work of national “breakthrough collaboratives.”  These cooperative nationwide efforts have served to both identify and spread the “best practices” of organ and tissue donation to hospitals and OPO’s across the country, especially those with the highest donation environments.  That growth continues but at a slower pace recently, calling for even more work in educating everyone about this urgent need.  But that’s where you and I come in. 

Patients are the living examples of both the need and the success of transplant today.  As you wait for your transplant, and again especially after recovering from a transplant, spread the word with your personal life experience as evidence of that need/success.  The most effective message is that one-on-one face to face that only you and I can give.  Remember, the lives you save in promoting organ donation may be both yours and mine!

From Bob Aronson

If you would like to donate money to help these Aizona patients pay for their transplants, should organs become available, you can do so through the National Transplant Assistance Fund (NTAF).  You can either call 1-800-642-8399 or make your donation on-line at http://www.ntafund.org/contribute/  

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

Also…visit and join my Facebook site, ORGAN Transplantation Initiative http://www.facebook.com/group.php?gid=152655364765710  OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ . 

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

Arizona Governor, “No Transplants for Medicaid Patients (the poor)”


Let’s start this blog with this undeniable medical fact,  “Everyone on the transplant list is dying.”  They are suffering from organ failure and that means sure death unless they get an organ transplant.  I know of what I speak because until August 21, 2007, when I got a new heart, I was dying from end-stage dilated cardiomyopathy. 

By way of this blog I am asking readers to make every effort to help save the 98 people in Arizona who were approved for transplants but have now been denied the life saving procedure.  You’ll find a donation link at the end of this posting.

The Decision by Arizona Governor Jan Brewer and the state legislature to cut Medicaid coverage for most organ transplants is arbitrary, cruel in the extrreme and, I believe, in violation of both the Arizona and U.S. constitutions. 

As of October 1, 2010 Arizona Medicaid stopped covering heart transplants for non-ischemic cardiomyopathy, lung transplants, pancreatic transplants, some bone marrow transplants and liver transplants for hepatitis C patients.  That means that about 98 people who had previously been approved for transplants will not be eligible unless they can raise the money on their own. Transplants can cost from $150 thousand to $500 thousand which does not include the anti-rejection drugs transplant patients must take for the rest of their lives. 

Arizona will save approximately $5 million by cancelling Medicaid organ transplant coverage.   So — not only have the state’s politicians decided to let 98 people die, they have also decided that human life in the state is worth exactly $51,020.41.  Don’t be surprised if in the future some life insurance company uses that figure to attempt to reduce jury awards in cases of personal injury and death.    

The Arizona Health Care Cost Containment System (AHCCCS) spokeswoman Monica Coury said her agency had the “horrible task” of putting together benefit reductions, and that the transplants affected represent a small number of patients (so that makes it Ok to let them die?).”

“Patients with cystic fibrosis who get a lung transplant might get extra time with a good quality of life, but inevitably the CF will re-infect the new lung,” she said. “Not everyone on that list is going to get an organ anyway.  There is a shortage of viable organs for these folks waiting on the list (so if there are not enough organs why save a few?  We should just let all of them die). ”

Read the story of a 27 year old Cystic Fibrosis patient who was depending on a transplant (but, of course, according to spokesperson Coury, it would only “give her extra time with a good quality of life.” So why bother?). http://azstarnet.com/news/science/health-med-fit/article_c8288a3a-8135-5cc9-bf0d-0745071bd74a.html    

Almost every American political organization agrees that the U.S. Constitution was created to form a government whose sole purpose is to serve the People as stated in the Declaration of Independence.  “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable rights. That among these are Life, Liberty and the pursuit of Happiness.” 

The preamble to the Constitution states: “We the people of the United States, in order to form a more perfect union, establish justice, insure domestic tranquility, provide for the common defense, promote the general welfare, and secure the blessings of liberty to ourselves and our posterity, do ordain and establish this Constitution for the United States of America.”

Founding father Alexander Hamilton maintained that the clause, “Promote the general welfare” granted Congress the power to spend without limitation for the general welfare of the nation.  So I ask, why is it more acceptable to limit spending on general welfare but to give defense an almost open checkbook, especially when both items are given the same emphasis in the same sentence of the preamble to our constitution?

The Constitution of the state of Arizona says, in Section 3 of Article ll in the Declaration of rights, “The Constitution of the United States is the supreme law of the land.”  That means Arizona must adhere to the guarantee of the General welfare in the U.S. Constitution.  Their own constitution gives them no options on the matter.. 

Article ll of section 4 of the Arizona constitution declaration of rights also says, “No person shall be deprived of life, liberty, or property without due process of law.”  Due process of law usually meaning the right to be heard in court, has been denied here, too.  Some say the Governor and the legislature have acted as vigilantes in sentencing 98 Arizona citizens to death.  

If we allow Arizona and perhaps other states to arbitrarily sentence people to die (mostly poor people by the way)  where will it end?   During congress’ deliberations on a health care bill it was charged that the Obama Administration would set up “Death Panels” to decide who would live or die if the new health care bill was passed.   Interestingly, “Death Panels” have been established, not by Obama, but by the very people who condemned them. 

Please make your most vigorous protest to the Governor of Arizona by calling her office at 602 542 4331 emailing her at http://www.governor.state.az.us/Contact.asp or sending a letter to Honorable Governor Jan Brewer 1700 West Washington Phoenix, Arizona 85007. 

Additionally I suggest you express your outrage by getting the facts out to Radio talk shows, Facebook Friends, Tweeters, newspaper comment pages, news agencies and anyone else you think could influence the decision makers in Phoenix.  This is not a frivolous matter, 98 lives are at stake here and we must do everything in our power to save them.

If you would like to donate money to help these Aizona patients pay for their transplants, should organs become available, you can do so through the National Transplant Assistance Fund (NTAF).  You can either call 1-800-642-8399 or make your donation on-line at http://www.ntafund.org/contribute/  

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

Also…visit and join my Facebook site, ORGAN Transplantation Initiative http://www.facebook.com/group.php?gid=152655364765710  OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ . 

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

%d bloggers like this: