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Art Caplan at MSNBC.com: Transplant list numbers raise doubts

Over at MSNBC, Art writes about the recent news that the UNOS transplant list might be overstating how many people are waiting for transplants:

Are we being sold a bill of goods about the number of patients waiting for transplants in the United States? There is reason to think so.

The United Network for Organ Sharing (UNOS) is the Richmond, Va.-based organization that holds the federal contract for distributing organs to those awaiting transplants in the U.S. UNOS says there are about 98,000 people who need transplants. But, a recent story in the Washington Post shows that about one-third of those are actually not eligible for an organ transplant on any given day.

What is going on? If UNOS and the transplant community are inflating the numbers to make the shortfall in organs seem worse than it really is, they risk losing the trust of the American people. That trust is the ethical foundation for organ donation in this country.

If one checks the UNOS waiting list for people who are "inactive," or ineligible to receive an organ, some startling facts emerge. More than 7,000 patients with renal failure have been on the ineligible list for more than two years. So have hundreds of others with a failing heart, liver or pancreas. Although some patients awaiting transplants are going to bounce on and off the list because of other chronic health problems, the number who remain inactive for two years or more cries out for some sort of explanation.

Some of the reasons patients become inactive on the UNOS list make sense. Some patients take themselves off the list. Others cannot be found for one reason or another. Some need to lose weight in order to survive a procedure, while others are temporarily too sick.

But there are large numbers of people sitting inactive on the list because their medical work-up is not complete, or because of insurance or paperwork issues. These are not such good reasons.

How well do patients understand an inactive classification? If one transplant center thinks patients don't have enough money, or cannot complete their paperwork in a timely manner, do patients realize they can try to enroll in another one? Why is UNOS allowing people on the list to twist in the wind? If medical work-ups are not getting done, where does the problem lie?

The American people have every right to expect that the numbers given for those waiting for transplants are absolutely accurate. If non-medical reasons are making it hard to receive a transplant, they should be widely known so that something can be done about them.

Truth is, even if you take off a third of those on transplant lists, the need for organs still far outstrips the supply. However, those who are waiting need to know that they have the same shot at getting a transplant as anyone else, no matter where their transplant center is. The American people have a right to expect absolute honesty about the number of people waiting for a transplant at any time. These are problems that demand attention from those who help pay the bill for transplants - you and me.