Kevin Mercado is waiting.From his bed in a cramped, windowless Shands Hospital room, with machines whirring and beeping all around him, the dark-eyed 11-year-old has plenty of time to think. He tires of the television set attached to the wall. He sleeps a lot. Usually, he talks to his mother, Evelyn Mercado, or other family members who share his vigil in Gainesville.
Did you know?
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An externally worn device
called the CardioVad is used
to keep some heart patients
alive while they are waiting
for organ transplants.
· An inflatable pump is sewn
into the aorta. A tube runs
from the pump to an external
"drive" unit, which contains
the battery and monitors heart
function. The drive unit is
attached by a second tube,
running behind the back of the
air compressor.
· When the heart contracts,
the pump deflates, aiding the
flow of blood from the heart.
Conversely, the pump
expands when the heart
expands, pushing the blood to
the rest of the body.
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SOURCE: LVAD Technology
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Kevin is waiting to live. The artificial heart connected to his chest and lying on the bed next to him pumping blood through his thin body is keeping him alive for the time being, but he needs a new human heart -- soon.He is not alone. There are 82,758 others in the United States waiting for hearts, lungs, livers, kidneys and other organs. Another 6,494 people died while waiting for organs in 2002, according to the United Network for Organ Sharing, a nonprofit organization that administers the federal government's organ procurement and transplant network. The number of people on the waiting list continues to increase; the number of donors does not.
Frustrated with a system that is failing to close the gap, some organ donation activists are pushing to bring money into the mix, asking Congress to relax a ban on the sale of human organs just enough to allow financial incentives for donation. Others are creating an organ-sharing group, broadly interpreting a federal law that allows potential donors to decide in advance to whom their organs will go. Members make known their organs should go to other group members even if other people are ahead of them on the transplant list.
The legal footing of the second approach is questionable, and both movements have opponents in medical and ethics circles. But there is general agreement that something needs to be done to improve the system.
PAYING FOR ORGANS
Amway founder and heart transplant recipient Rich DeVos is one of a growing number of people who believe the only way to get more organs is to offer money for them.
"You know, people say I'm crass when I say this, but that's too bad," said DeVos. "If you want something, you've got to pay for it. That's just how this world works."
The idea of financial incentives is not popular among the medical community, but the political community may be coming around. In 1984, the prohibition of the purchase or sale of organs was codified in the National Organ Transplant Act. Any change would require a congressional act. This fall, a bill is expected to go before Congress that would allow limited tests of financial incentives.
In 1996, DeVos, who lives in Michigan and owns the Orlando Magic NBA franchise, was told without a new heart, he would have only a year or two to live. As a 70-year-old who already had one bypass, he was told his chances of getting a heart were slim. He found a doctor in London who said it would be easier to get a heart there, so he and his wife left for England.
"There was a certain amount of ridicule because I was called a 'rich American who came over there to buy a heart,' " DeVos said. DeVos got his heart after five months, when a woman who needed a lung transplant was told by doctors she should have a new heart as well. Hers was a perfect match for DeVos' rare blood type.
Although luck, not money, got DeVos his heart, he said the idea of giving people money for organs came to him then and seemed perfectly logical. Since then he has worked to make financial incentives a reality in the United States.
"It just struck me as a business guy, if you want something, pay for it," he said. "It may be simple, but you keep trying to get people to give you things, that's nice, but obviously it hasn't worked."
DeVos said it has not been determined yet how financial incentives would work, but the most popular idea is a $10,000 payment to the donor's estate after death.
"It's really just a gimmick to get people to sign up," he said. "But it has to be a big enough gimmick to get people to say 'yeah, I'll sign up for that, it's a nice little policy.' "
The money would be paid by insurance companies that would benefit financially by getting people off the waiting list sooner.
"You know, $10,000 is nothing when they're paying all the other money to keep someone alive in the hospital," DeVos said. "The bills are clicking away every day."
More people are listening to DeVos. He spoke in front of a congressional committee this summer. No insurance industry voice was heard at the hearing. But Devos' pro-money stance is being supported -- at least to an extent -- by both the American Medical Association and United Network for Organ Sharing. Both organizations support testing of financial incentives.
"Let us just test this thing," DeVos said. "What is that going to hurt? It can't make the problem any worse."
But some in the transplant community believe it will. The National Kidney Foundation has taken a firm stand against financial incentives. Earlier this year, the foundation released a position paper on the purchase and sale of organs.
"Offering direct or indirect economic benefits in exchange for organ donation is inconsistent with our values as a society," the paper reads. "Any attempt to assign a monetary value to the human body, or body parts . . . diminishes human dignity."
The paper goes on to say payments would exploit "economically disadvantaged Americans" and "be an affront to the families of donors who have already made an altruistic gift of life."
A FELLOWSHIP OF DONORS
Dave Undis said the group he founded, LifeSharers, offers something much more valuable than money -- it offers priority.
Membership in the network is free, and the only criteria for joining is to sign up to become an organ donor. Then should you ever need an organ, you would be given priority as a member of the network. There is no guarantee, however, that medical personnel and organ procurement officials would honor that request.
Undis, a retired insurance executive who lives in Nashville, founded LifeSharers two years ago after he read two reports in one day about the shortage of organs.
"It was just a coincidence, but it made me think," Undis said. "this is a problem that can be solved. It's not like curing cancer, we just have to give people a reason to sign on the dotted line."
The 49-year-old said he did not come up with the idea for LifeSharers, which currently has more than 1,500 members, but used the Internet to make the idea doable.
Cooperation from the medical and organ transplant communities -- which has been tepid at best, Undis said -- would be necessary for the organ-sharing network to work.
"We haven't really gotten any positive reaction from the medical community," he said. "This is introducing a nonmedical element into the process, and they don't seem to like that."
But Undis, who says LifeSharers members know there is no guaranteed priority, believes that attitude will change over time.
"Every person in this country has the right to decide who gets their organs," Undis said. "And we're relying on the medical community to honor that; they have every reason to honor that and no reason not to."
Undis is referring to the National Organ Transplant Act, first enacted in 1968 and amended in 1984, which allows designated donation. It refers, however, to donations to an individual, not a group of people, and this is where the problem lies.
Dr. Robert Metzger, medical director of TransLife, the Central Florida organ procurement organization, said the LifeSharers concept has pros and cons.
"I think it's an interesting concept based on reciprocity," Metzger said, "but the law says you can't donate directly to a group of people like women, Caucasians, etc."
Undis says because there are no criteria, such as being a certain race or political persuasion for instance, to join LifeSharers, that argument should be moot.
There are 10 LifeSharers members who are waiting for organs. None of the members has died since inception, so there is no way of knowing if the idea will work. Undis said it will only take one time.
"If one of our members dies and their organs get to another member, we'll have 20 million members overnight," he said. "That will be the test."
Metzger said financial incentives and the priority network may have some impact, but he is looking to a different solution.
"We need another source. We need to be able to grow organs," he said. "Either through stem cell research or conquering the use of animal organs. These are the aspects of research that are most promising."
NOT MANY HEARTS OUT THERE
In the meantime, Kevin and his family wait.
His mother knows something about organ transplants. Her brother has had two liver transplants and is doing well. A 4-year-old cousin also received a new liver, but died shortly afterwards.
"It's the waiting," Mercado said. "That's the hardest thing."
Kevin knows there aren't many hearts out there for him, and he knows a child would have to die for him to live. He only hopes that the child's parents will be able to see the good that could come out of it.
"If they die, they're not going to use those organs anymore," he said. "They should give them to someone else so they can live."
jeannine.gage@news-jrnl.com
