James Richardson of Seneca, South Carolina needs a new heart. That, he says, is a frightening fact: "There's nothing a person needs more than a new heart," he says.
All he really needs, of course, is a donor. Fortunately for Richardson, South Carolina is a state where a patient doesn't have to wait very long for an organ.
Current policy says donated organs go first to patients within the state and region, with potential recipients ranked by severity of illness, chances of survival, and how long they've been waiting.
Waiting times vary from state to state. Just how dramatically became apparent last month, when a government report revealed that the median wait time for a liver in South Carolina, for example, is 136 days while in Nebraska it's 596 days.
Donna Shalala, secretary of the U.S. Department of Health and Human Services, says, "You shouldn't be discriminated against on the basis of where you live. Your life shouldn't depend on geography."
She argues that organs ought to be distributed on the basis of medical need. "I continue to be appalled that someone that lives in New York City can wait 500 days. And yet across the border in northern New Jersey, they can get an organ in less than 60 days."
The federal government has decided that this local organ allocation system is flawed. It has proposed a regulation that would establish a national waiting list and donor bank. In theory, the patient who needs the organ most gets it, even if the patient is in Iowa and the organ is in South Dakota. The policy has been dubbed "sickest first."
Dr. Jack Crumbley, director of thoracic organ transplantation at the Medical University of South Carolina, is opposed to the proposed regulations. "'Sickest first' is a very seductive mantra," he says. "It makes superficial sense when you don't look at all the ramifications of how things will work out."
He argues that patients in less populous regions will suffer. "Organs that are in South Carolina will be exported in a larger number, and the number of patients that we can do in South Carolina will go down," he says. "So they wouldn't be transplanted locally. They would be transplanted in the centers with the longest and biggest list."
South Carolina has joined with 30 other small and medium transplant centers in 21 states to fight the proposal, which would take effect in October 1999. The coalition argues that the new regulation will mean fewer organs, fewer transplants, longer waiting times and more deaths. At the very least, they argue, it will jeopardize local care.
Ashley Redman and er daughter Jenna know the Medical University of South Carolina well. Jenna is only three, but she has already received two liver transplants there.
Redman is worried about any change in the policy. "There's a possibility that she will need another transplant. So this battle for me as a mother isn't over," she explains. Jenna waited for only a little over three months for one transplant. "It's worked for Jenna the way it is now," her mother says. "I can only speak for my family and it's worked for us. And God forbid we ever need it again, I want it to be here."
Dr. Charles Miller supports the proposed regulation. He is a liver transplant surgeon at Mount Sinai-New York University Medical Center. Right now, the median wait for a liver in New York State is 511 days.
"I'm tired of seeing patients get sick, not have a chance and die when I know patients are being transplanted in nearby communities who are much healthier than ones that are being transplanted here," he says. "That's not fair."
And, says Dr. Miller, "A lot of these centers are very satisfied with the supply of organs that come to them for their patients. They don't have many many patients coming to them for treatment from all over the country."
That is one reason why the older established centers have such long waiting lists. People with the means often travel the country, listing at multiple centers.
There are other reasons. In the past, medical listing criteria have been inconsistent. And, hospitals in urban areas have many organs that are unusable because their donors had diseases like HIV and hepatitis.
Every year, 4,000 people die waiting for organs. An estimated 60,000 are waiting for transplants because there simply aren't enough organs. Both sides agree on the facts.
"It shouldn't be organ donation. It ought not be 'I gave something.' It ought to be a duty," declares Dr. Jack Crumbley.
Dr. Miller would concur: "The donor can supply two lungs, a heart, a liver that may be used. Two pancreas, two kidney and other tissue..." One person, he notes, can save 10 or more lives. "It's an amazing gift," he says.
But the bitter argument reappears when it comes to how to increase organ donation.
Dr. Crumbley says, "I think people are more likely to donate if they think about an organ going to a neighbor, or somebody who's within their community or within their state. People root for the home team. People are interested in the home team. They are interested in what happens at their local transplant center."
But, the way Dr. Miller sees it, "Americans donate for Americans. Human beings donate for human beings."
"Forget about local parochialism," he says. "Just forget about it. It's the wrong way to go. Local parochialism has been the status quo for the past number of years. Let's make the system fair. It will increase donation and more patients will beneft from transplantation."
When asked why the debate is so fierce, Shalala responds,
"Because there is money and power involved...Because life and death are involved."
The money is big: an average liver transplant and follow-up care can cost more than $315,000. Multiply that by 50 or 100 operations and it means millions of dollars for transplant centers. And, 60 percent of those operations are being paid for by the government through Medicare.
Shalala says, "In this case these organs belong to no one part of the country, to no individuals. The taxpayers of the United States pay for most of these transplants."
Will a new organ allocation system, already the subject of intense congressional hearings, merely rob Peter for Paul? Or will it make for a fairer system? The fight will continue until October.
For more information:
National Coalition on Organ and Tissue Donation
Web site: www.SHAREYOURLIFE.org
Medical University of South Carolina Transplant Center
1-800-424-MUSC or 1-843-792-1414
Mt. Sinai-NYU Medical Center
New York, NY
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