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tazzygirl -> RE: Transplants and politics (6/10/2013 12:34:46 PM)
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How Organ Allocation Policies Are Made
Organ matching and distribution policies are developed by committees and a board of directors comprised
of organ procurement and transplant professionals, patients, donor families, and the public. As the
transplant field continues to advance, organ allocation policies evolve. Goals are to make the best use of
every donated organ and give every transplant candidate a fair chance to receive the organ he or she
needs. Organ transplantation is unique in U.S. medicine because patients have a formal role in policy
making. The public can provide feedback on policy proposals by visiting http://optn.transplant.hrsa.gov
(click on Policy Management>Public Comment). Call the UNOS patient services line at(number redacted for TOS) for more information.
http://www.unos.org/docs/WEPNTK.pdf
You may not like how the system is set up, but there is the system.
Here is the waiting list...
Waiting list candidates 118,312 as of today 3:10pm
Active waiting list candidates 75,643 as of today 3:10pm
Transplants January - March 2013 6,891 as of 06/07/2013
Donors January - March 2013 3,413 as of 06/07/2013
............
A letter from the transplant system to Seblius
Dear Secretary Sebelius:
We have received your communication through Dr. Mary Wakefield directing the OPTN to implement the order of Judge Baylson of June 5, 2013 and last night took the steps necessary to allow the OPTN computer system to consider this candidate alongside adolescent and adult candidates for allocation of adolescent and adult donor lungs. She also retains her existing priority status for lungs from pediatric donors.
In response to your request in your letter of May 31, 2013 requesting the OPTN to review OPTN lung allocation policy as soon as possible, and understanding the time-sensitive nature of this review, I have scheduled a meeting of the OPTN Executive Committee on Monday, June 10th. To inform that discussion, Thoracic committee leadership has already begun to review data regarding the outcomes of the current allocation system. On Monday, the Executive Committee will review OPTN data regarding pediatric lung transplantation, including waiting time, organ offers, organ transplants, and wait list mortality. The committee will hear from the Thoracic and Pediatric committees, and from representatives of the public.
If the available data suggest that a change to the lung allocation policy is warranted, the Executive Committee would be able to approve an interim policy change and expedited plan for implementation at that time. In addition to any action the Executive Committee may take on Monday, the OPTN will continue our thorough review of the pediatric lung allocation policy.
We will apprise you immediately of the results of the Executive Committee discussion.
Sincerely,
John P. Roberts, M.D.
President, OPTN Board of Directors
http://optn.transplant.hrsa.gov/ContentDocuments/OPTN_Letter_Secretary_06-06-2013.pdf
I would be curious to see what proof you have that discrimination has occurred. In my opinion, the transplant organization is one of the best run systems in the US. Its a bitch when you have x amount of organs and xx amount of patients waiting. It cant always be "first come, first serve" because they wont always match.
I received a transplant patient one night in Charleston. 18 years old kidney transplant patient. Her birthday. Three others were called before her. They are called in 30 minute increments to get to the hospital for testing. If you cant make it in 30, your name drops back on the list, at least there. The first two were not matches beyond the ABO, she was. We took her in a jello cup with a candle.. sang happy birthday to her, and we all had tears in our eyes.. what a wonderful gift to receive.
The organization is not a group of heartless bureaucrats with no desire to help. But they cant help everyone. Lines have to be drawn, decisions have to be made. I would love for the committee to redo their stances on under 12 year olds going on the lists with adults. However, there are many, many factors not many are considering.
For instance, CF children are often smaller for their age...
quote:
Growth delays often continue, and kids with cystic fibrosis tend to be significantly smaller than others their age.
http://www.chp.edu/CHP/cystic+fibrosis
The adult lungs have to fit into the child's body.
Q: Why don't they allow children under 12 to get adult lungs?
Caplan: "Adult lungs don't fit well in children's bodies and that makes it hard to transplant them. You are looking at using a piece of lung instead of a whole lung, and that makes it makes it a more difficult procedure and less likely to work.
"Lung transplants are a difficult operation, and they do fail. At three years after a lung transplant, about a third of the people who got them are dead. It doesn't work all that well compared to other kinds of transplants. That's partly because when you transplant lungs you have to give immunosuppressive medication so that they don't reject the lung. That opens up the lungs to infection. The lungs are constantly exposed to viruses and bacteria so infection is a huge problem with lung transplants."
Moreno: "Children tend to be too small to get adults lungs. Every time you give one person a lung or part of a lung, you aren't giving it somebody else."
http://www.usatoday.com/story/news/nation/2013/06/07/lung-transplant-girl-ethics/2397701/
Q: What can we learn from this case?
Caplan: "What you can do to help is make your organs available. There aren't enough. We need to be thinking about whether we have signed our organ donor cards, have we talked about being an organ donor with our loved ones.
"When we face these hard choices, we want to pay attention to what transplant experts say about who this is most likely to work for and not get into arguments about who is the most deserving person."
Moreno: "One good thing that might come out of this would be a review of the rules of lung transplants in kids. That will not satisfy these parents, and it will probably not come in time for these parents. The review needs to be done by people who understand medical and surgical and related technical problems for these patients."
http://www.usatoday.com/story/news/nation/2013/06/07/lung-transplant-girl-ethics/2397701/
If you are upset by the rules, then make a difference. Be an organ donor. Sign the cards, indicate it on your DL, tell your family. There are far too many waiting. There simply isnt enough organs.
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