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Proposals to shorten transplant list make no gains
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Each day, 17 Americans die while waiting for an organ transplant.
That grim statistic emphasizes the fact that the waiting list for organs is bigger than ever -- it now sits at 102,118 -- and gives a special urgency to the debate over how to shrink the gap between supply and demand for these life-changing gifts.
There are several proposals for increasing organ donations, none of which has made much progress in America so far. The three leading ones are:
• Making payments to donor families, which would cover some expenses for families willing to donate a relative's organs.
• Enacting "presumed consent," which would assume someone's organs are available for transplant unless a family opted out of donation.
• Establishing "A" and "B" lists of potential recipients, which would give preference to people on the waiting list who had agreed to be organ donors themselves.
Susan Stuart, chief executive officer of the Center for Organ Recovery and Education, which oversees organ donations in this region, said she favors compensating donor families for funeral expenses if the payments are handled carefully.
"When you think about the entire organ transplant process," she said, "the transplant surgeons, the organ procurement organization, the recipients -- everyone's getting some kind of compensation except the donor family who's given this gift of life, and many of these donor families can't even afford a funeral. Why should we have to walk away from them?"
Barbara Murphy, a kidney surgeon and president of the American Society of Transplantation, said her organization favors a limited test of this idea.
"What we have suggested is that there be studies on a smaller scale of paying funeral expenses to see whether they do impact donation rates," she said.
Even if there were a payment system in place, it's hard to know how much difference it would make, some experts said.
Arthur Caplan, the Emanuel and Robert Hart professor of bioethics at the University of Pennsylvania, said he believes payments to families would only increase donations a few percentage points at most.
Transplant advocate Reg Green agrees.
Mr. Green, whose son Nicholas was shot to death on a family vacation 15 years ago and whose organs were donated to seven people in Italy, said "the problem is, if the payments aren't very big, they're not going to make a lot of difference in the number of donations, but if the payments are high, it will commercialize a process that today is free of that."
The second option, presumed consent, does not exist in the United States but is the standard in several European nations.
The nation most often mentioned in that category is Spain, which by far has the highest organ donation rate in the world -- 34 people per million residents, compared with 24 per million in the United States, according to the European Transplant Coordinators Organisation.
But Dr. Caplan said Spain's high donation rate is not just because of presumed consent. In fact, he noted, Europe's oldest presumed consent law is in France, where the donation rate is slightly lower than in America.
Dr. Caplan, who recently spent several weeks in Switzerland studying European transplant practices, said many French doctors, nurses and patients don't seem to know the country has a presumed consent law. So the success seen in neighboring Spain means that "you have to spend a lot of time training and educating people on the law, which Spain evidently has done," he said.
The third idea, a preferred list of potential recipients, has been promoted primarily by LifeSharers, a nonprofit group that has signed up more than 12,000 people who are willing to donate their organs to each other.
"If [the United Network for Organ Sharing] allocated organs first to registered organ donors, more people would donate and thousands of lives would be saved every year," David Undis, LifeSharers executive director, said last year.
The concept gets support from CORE's Ms. Stuart.
"I think there should be legislation that if you are put on the waiting list for an organ, you have to be a donor yourself. It's very discouraging when we have a transplant recipient and they die and we approach the family about donations and they say no."
A dramatic example of the LifeSharers' idea occurred last month, when Boston doctors performed their first face transplant. The man whose face was donated had died after getting a heart transplant.
While all these ideas hold some promise, they might not do much to cut down the waiting list significantly, Dr. Caplan said.
The only way to make a major impact, he said, is to start solving health problems that fuel the need for organ transplants and pour more money into research on alternatives to donated organs.
His four-point plan for addressing the big picture includes:
• Much greater spending to prevent such problems as diabetes, high blood pressure, smoking and alcohol abuse, which account for a major share of the patients waiting for kidneys, livers, pancreases, hearts and lungs.
• More stem cell research to figure out ways to grow replacement tissues that could be used to repair damaged organs without having to replace them.
• A serious look at animals as a source of organs, particularly pigs, which are economical to breed and are similar in many ways to humans. "They're the same size as humans," he said, "but just horizontal."
• Redoubled work on artificial organs and other technology, from improved kidney dialysis to heart assist devices to better insulin pumps.
Noting that 80 percent of people on the transplant list are waiting for kidneys, the transplant society's Dr. Murphy said a push to slow down kidney disease would be one of the smartest ways to tackle the problem.
"The major way of impacting this is to reduce the number of people reaching kidney failure, so even if progression could be slowed, it could have a significant effect," she said.
She also feels medical caregivers need to be more skilled in approaching families in hospitals about donating their loved ones' organs.
"There are still a lot of opportunities where potential donors are not approached," she said. "We need to do a better job of dispelling the myths about what signing the donation card means and the fears that it will somehow alter people's end-of-life care."
In some ways, Dr. Caplan said, the solution to the organ transplant problem is for society to stop focusing so much on the drama of organ transplants.
"The glamour is on the high end of medicine with the technology," he said.
"News organizations never run out to take a photo of a guy going into an Alcoholics Anonymous meeting, but we all know the picture of the doctor running around with an organ in a cooler.
"We find it dramatic to do rescues, but boring to prevent the need for them."
First Published May 24, 2009 12:00 am
