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Posts Tagged ‘Organ donation’

U.S. Senator John Rockefeller (D-WV) and Representative Joe Courtney (D- CT) have introduced legislation to prohibit pre-existing condition exclusions in group health plans and in health insurance coverage for groups and individuals.  For living organ donors, this is important news, because health insurance plans can and do consider living donation to be an “pre-existing condition” that may impact a donor’s ability to secure health insurance and the cost of premiums.

Called the Pre-Existing Condition Patient Protection Act of 2009, the legislation is being supported by a who’s who list of organ-transplant-related non-profits:  The National Kidney Foundation, The American Society of Transplant Surgeons, NATCO – the Organization for Transplant Professionals, and the United Network for Organ Sharing (UNOS). 

To get informed, check out govtrack.us, where you can read the full text of the bill, track its movement through the House and Senate and read the floor speeches made about it.  Here are the links directly to the House and Senate versions:

If you wish to write your Congressional representatives, you can look them up at www.senate.gov and writerep.house.gov/writerep/welcome.shtml, both of which offer convenient email forms as well as mail and fax information.

For those who want to support the legislation, Transplant Alliance offers this sample letter:

(Date)
The Honorable (add Senator’s full name)
U.S. Senate
Washington, DC

Re: Preexisting Condition Patient Protection Act of 2009

Dear Senator (add Senator’s name)

(I or your organization) request that you support the Act introduced by
Congressman Joe Courtney, and Senator John Rockefeller titled
“Preexisting Condition Patient Protection Act of 2009”. This Act will
prohibit preexisting condition exclusions in group health plans and
health insurance coverage in the group and individual markets, including
live organ donation. It will remove barriers to live organ donation by
eliminating the fear of losing access to affordable private health care
insurance when becoming a live organ donor.

There are currently over 109,000 people on the nation’s waiting lists
for donor organs and over 6,000 Americans die each year waiting for a
donated organ. We must to do what we can to increase live organ
donation. Pre-existing condition exclusions dramatically increase the
cost of health insurance for these altruistic live donors, or have the
impact of rendering the person uninsurable altogether. The fear of
losing access to affordable health care insurance can be a major barrier
to potential live organ donors when contemplating this gift of life.

Live organ donors are a very low health care risk. It is time that the
federal government prohibits private health insurers and self-insured
health plans from treating live organ donors as having a pre-existing
condition. Removing live organ donation as a pre-existing condition is
a necessary component of health care reform.

(you or your organizations name here) appreciate(s) your consideration
of this request to support this Act that will prohibit live organ
donation from being considered a preexisting conditions. Thank you.

Sincerely,
Name
Title
Organization
Address

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Jeffrey over at Transplant Alliance called the online community’s attention to a beautiful Web site called ellasliver.comElla Watson is a 25-year-old artist who somehow, remarkably, managed to survive biliary artesia as an infant and live relatively complication-free until she was 24.  She now needs a liver transplant, and her family and friends are considering being living donors.  Her art work is fun to check out — she has a photographic “medical militia” series with pieces titled things like “Shoot from the Gut” featuring waterguns and percutaneous bile drains – along with a perfect “mercedes” scar. 

I don’t know Ella and have never talked to her, but she is a member at Transplant Alliance, a great community to explore if you are experiencing transplantation in any way.

Thank you, Ella, for your energy, your humor, your spirit.  Let us know at GGF if there is anything we can do to support any living donors who might pop up to help. We’re here for them!

Here’s hoping your Web site can come down soon and you are on your way to a healthy new chapter.

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Score another achievement for kidney paired donation (or daisy chain transplants, or domino transplants, as they are sometimes called). Johns Hopkins in Baltimore joined Barnes-Jewish Hospital in St. Louis and Integris Baptist Medical Center in Oklahoma City for a 12-patient, six-transplant cross-country kidney chain.

An anonymous altruistic living donor began the chain, and a paitent on the UNOS waiting list for a kidney was the last link. According to the Johns Hopkins news release, all six donors and all six recipients are recovering.

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In case I haven’t mentioned this in a while, I love my brotherJoe was recently back in the hospital with an infection for a brief stay, and took the time to mail me the day’s menu, as a nod to our memories of the marvelous food we had back when we were occupying nearby hospital rooms post transplant.  He highlighted one of the dinner choices: “290: Homemade Salisbury Steak.”  It’s homemade! How can you beat this?!?

Alarmingly, it is the only item on the entire menu that is, apparently, homemade.  The rest must be shipped in from a factory – an idea that scares me a little for items like “132: Garden Quiche” and “956: Cheese Omelet.” 

Ah, hospital food.

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My good friend Mindy, who’s also a Greatest Gift Foundation board member, is vegan, so she was delighted to see in this one excellent blog post a woman’s personal account that ties a vegan, pro-animal rights lifestyle with her other favorite topic, living organ donation. 

I noted with interest that the author, living kidney donor Hillary Rettig, was advised not to eat too much protein going forward so as not to strain the remaining kidney. I had not heard that before — had any of you who have given a kidney?

By far my favorite paragraph in Hillary’s essay is the very last one, which I’m pinning up in my office as an ongoing source of a smile.

Sometimes, I find myself wondering what my kidney is up to at the moment. “I wonder if it’s walking by the pond.” “I wonder if it’s working at the vet clinic.” “I wonder if it’s watching bad TV.” I guess I’ve come to think of it as being like a dog I gave up for adoption. I don’t wonder if it’s happy, though, because I know that if any kidney is happy, mine is — having found its “Mr. Right,” an amazing being who shares its values and is committed to helping keep other amazing beings alive and happy.

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Tomorrow, David will join the ranks of living donors when a portion of his liver is transplanted into his Uncle, Paul, in Toronto, Ontario.  (Find his blog here.) Please join me in sending him best wishes for a safe surgery, a swift recovery, and the delightful outcome we all hope so badly for.

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After digesting the Wall Street Journal’s 2,500-word opus on the breaking scandal at the University of Pittsburgh Medical Center’s renown transplant center, my emotions are stirring violently this evening.  “Disappointed” is an understatement. “Shocked” is an overstatement. “Angry,” “betrayed,” “saddened,” “curious,” and “determined” all come to mind, but none alone fits.

More than anything, I feel protective.  I think about this amazing community that the Greatest Gift Foundation exists to serve, and I want them to be protected, not only from unethical behavior, but also from misinformation and false perceptions that will surely follow the resulting media blitz.  So this post is my effort to help move people toward enlightened, in-context conversation.

First, the scandal summarized in one paragraph:  Dr. Amadeo Marcos is accused of unethical practices to inflate the number of liver transplants performed at UPMC under his leadership, including questionable use of “expanded criteria” cadaver donor organs and living organ donor organs.  He is accused, per the WSJ article, of three primary abuses: 1) falsifying (or, at least, misrepresenting) the frequency of negative outcomes of his surgeries to make his program seem more successful than it was; 2) putting donors and transplant patients at unethical risk by performing transplants on patients whose low MELD scores suggested that the risks of the procedure would outweight the benefits; and 3) having romantic affairs with his co-workers.  A prominent motive, the article suggests, is financial.

Second, a plea for informed discussion — enveloped in context — from here: I hope every reader who encounters the WSJ article (and other related news items) will be alert and judicious — that they will carefully distinguish between proven facts and unproven assumptions, and that they will be wary of statements that could be lacking context. 

But I know they won’t (people don’t).  They will need our help.  Because living donation can be such a positive force in people’s lives, and because it is such a viable part of the solution to the awful organ shortage that causes so many people to suffer, we need to do our best to constantly increase our world’s understanding of living donor risks and benefits, truths and myths, ethical problems and very real successes.  In the wake of such high-profile news, we need to do this now more than ever.

Below are some of my personal thoughts, presented in the order they occur to me as I read the article sequentially.  Pass them on, debate them, add your thoughts to comments, whatever helps keep an informed conversation going with the people around you!  (And thanks, as always, humbly, for reading.)

Opinion 1: Transplant surgeons, governing bodies, administrators, and other key leaders should face the hard and ugly facts head-on.  If Marcos truly was acting unethically, and doing so for reasons beyond the best interest of donors and recipients, there should be severe consequences.  We should all insist upon strict adherence to ethics, quality governance to enforce ethics, and justice for any crimes or abuses.  This is the only way living donor and expanded-criteria transplantation can succeed as a part of our solution to the organ shortage.

Opinion 2:  The WSJ article offers no context to support the claim that Marcos or UPMC went overboard on the use of expanded criteria donors, which the article defines as “deceased people who had been older or sicker than preferred liver donors.”  So the public should take this accusation with a grain of salt.  Research is ongoing about the impact of donors who are older than 50 or who have had certain illnesses.  It is pointed out that the average age of Marcos’ deceased donors (47) was nine years above the national average in 2003.  But considering that UPMC is one of the most experienced and advanced transplant centers in the country, it might be reasonable for it to be pushing the envelope in the name of innovation.  So much goes into any worthy assessment of the ethics of the age of the donor; we should be cautious about forming an opinion just on the basis of this one article.

Opinion 3: Marcos’ former co-workers say some damning things, in direct quotes, in the article.  Be wary of the fact that they may have been taken out of context or misrepresented by the article’s author.  Case in point is this excerpt:

“At times, according to [Dr. Howard Doyle, now director of surgical critical care at Montefiore Medical Center in New York], patients healthy enough to walk into the hospital before being transplanted died ‘because they had a high-risk liver put into them.’

If we take that quote literally, it’s outrageously worthless.  The general public does not know the background of this enough for the assertion to hold any water with us.  Consider these questions:
* What criteria is Doyle using to define “healthy enough” — MELD score? Likelihood of dying within three days or three months?  Did the patient have a say in what “healthy enough” meant?
* Did those patients know what they were going into?  Did they have an opportunity to weigh the risks and benefits, and decide to try the transplant? If so, does that make the decision to go forward any less unethical?
* What criteria is Doyle using to define “high-risk liver” — the age of the donor alone?  The arbitrary choice of 40 years old, 50 years old, the national average… it’s all debatable as a standard (and being debated at the highest levels of leadership in the U.S.A.).  A healthy and fit 55-year-old donor with a six-for-six antigen match to the recipient could be, in some cases, a much lower risk than some 30-year-old donors with a three-for-six match. 

Opinion 4: Of all the horrible accusations in the article, this one angered and saddened me most:

[Dr. Thomas Starzl’s review of 121 living donor liver transplants] concluded that about 10% of the living donors had suffered serious complications, belying Dr. Marcos’s claim that this number was zero.

If Marcos truly concealed complications experienced by his living donors, I am furious — and we all should be.  Our system does far too little as it is to care for living donors who experience negative consequences (mental or physical).  Ignoring them or covering them up is an injustice of inconceivable proportion.  But let’s also be curious about what “serious complications” are, about how that 10% compares to known averages and likelihoods, and about how well those living donors were informed about the risks ahead of time.  Personal input: Had I known there was a 10% chance I would have serious complications, and were those serious complications clearly explained to me ahead of time, I want to believe I would have still gone ahead with my gift of my liver to my brother. 

Opinion 5: I could give two shits about the affair stuff.  Yes, I want to believe that the businesses I patronize — especially the specialists I rely on, like, oh, hospitals — are promoting ethical behavior that protects consumers from conflicts of interests and compromised quality of service.  I insist on it, in fact.  If Marcos broke hospital policy or was harassing women, he should be tried and disciplined.  But it should be a separate discussion from this bit about the ethics of his transplantation choices.   

Hm.  I have many more where these thoughts came from.  But this post is almost as long as the Journal article, and I don’t want to bore my poor blog readers. 

I’d sure like to hear what you all think of this story.  Comments???

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