BehindTheMedspeak: The empire strikes back - UNOS to patients: get in line even if you die waiting

You may have noted recent pieces both here and in the news on the sudden threat of Internet organ donations to UNOS, the nation's dysfunctional, near-useless organ transplant central registry.

Yesterday's death rattle from the beleaguered group was its most desperate yet: they now ask that hospitals refuse to transplant organs located outside their system.

Who do they think they are?

They would prefer a patient to quietly wait in line and ultimately die rather than go out to locate a suitable donor on their own.

Unbelievable.

I look for Senate hearings on this subject in the very near future, undoubtedly leading off with Robert Hickey (on the left below),

the world's first recipient of an organ located via the Internet.

UNOS and its self-serving executives should be ashamed of themselves, putting their cushy jobs and fat salaries ahead of the patients whose best interests they purport to represent.

Here's A.J. Hostetler's story from today's Richmond Times-Dispatch:

UNOS opposes transplant appeals

Board says it's not fair when patients solicit organs for themselves

The organization running the nation's transplant network said yesterday that patients who solicit organs for themselves from unfamiliar donor families undermine the system and the public's trust.

At a meeting in Reston, the board of directors for the Richmond-based United Network for Organ Sharing said it was upholding the country's long-standing tradition of sharing scarce donor organs based on equity and medical benefit.

"Most deceased organ donation takes place anonymously through the national organ-distribution system. At times, donors or donor families want to donate to a specific person they know, and we support that," said UNOS President Dr. Robert Metzger.

"But we strongly oppose public or private appeals that effectively put the needs of one candidate above all others and pose concerns of fairness. Transplant candidates rely on the public's trust in the fairness of the allo- cation system and support of that system through donation. Public appeals may jeopardize that trust."

UNOS decided in June to formally address the issue as the nonprofit outfit noticed an increase in public, controversial transplant appeals it says subvert the 20-year-old system that is based on medical criteria and "sickest first."

Len Geiger, a Gainesville, Ga., man who waited eight years for his double-lung transplant and just recently ran the Richmond Marathon, said he understood that some who are awaiting a transplant may feel that "desperate times call for desperate measures."

But would-be recipients must trust in the transplant system and their doctors, he said.

"If people start playing outside the system, equity goes out the window," he said.

Kidney recipient Linda Cheatham of Alexandria agrees that equity is essential, but said she was "totally torn" and understood the fear some patients may feel.

"There's no happy answer," she said.

UNOS' system may not be perfect, "but it works."

While not law, UNOS' statement carries weight with the U.S. Department of Health and Human Services and physicians and hospitals that participate in the transplant network.

It applies to organs from dead donors "where no personal bond exists between the patient and the donor or donor family."

The organization is still considering a formal position regarding living donors with no such bonds.

Those donations are typically managed by local organ-procurement groups, not UNOS.

Recent public appeals include the summertime campaign by a Houston man who successfully advertised on billboards and the Internet for a new liver.

In October, a man who paid $295 a month to an Internet site got a living kidney transplant in a controversial operation in Denver.

However well-intentioned, such appeals ignore the greater good and divert organs from patients whose medical need may be greater, said Arthur Caplan, a University of Pennsylvania bioethicist.

"It really is just unfair to try to jump ahead in line, and it risks killing people," he said.

The lines are long.

Yesterday, 87,247 people around the country were waiting for a heart, liver, kidney, pancreas, lung or intestine, most of them for kidneys.

Only about 25,000 people get the life-sustaining organ, and nearly 6,000 people a year die after failing to get a transplant.

Those needing kidneys are increasingly turning to family, friends, co-workers and even strangers willing to give one of theirs.

Last year, 6,471 kidney transplants came from living donors, while only 5,754 came from deceased donors.

This widening gap between need and supply raises concerns that people will turn to buying and selling organs, an illegal practice in the United States where body parts - organs, blood, tissue, sperm and eggs - are considered by law a gift.

Elsewhere, however, advertising the sale of organs is increasingly common.

University of Virginia bioethicist Paul Lombardo just returned from Pakistan, where he said there are "tons of advertising" and a growing industry of "transplantation tourism" for those with money who are willing to travel and pay for organs and operations.

"It's difficult for UNOS to maintain this position, a laudable position, when all of the commercial energy is going in the opposite direction," Lombardo said.

"UNOS is facing an uphill battle."

If a hospital or physician has a patient who turns to such public appeals, UNOS says the system's equity should be ensured, with consideration given to medical facts, ethical guidelines, laws and allocation policies.

UNOS operates the Organ Procurement and Transplantation Network under federal contract.