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The organ gap 

There was a time when the idea of transplanting human organs was the stuff of science fiction and cheesy horror films. Today, organ transplants are a standard feature of the medical landscape. But out of success has come crisis. Would-be transplant recipients in Rochester and throughout the country face a disparity of supply and demand that grows worse each day.

            The organ transplant era began in December 1967, when a surgeon in South Africa named Christiaan Barnard placed the heart of a 25-year-old woman who suffered fatal brain damage into the chest of a man with advanced heart disease. The heart recipient lived only 18 days after the operation, but news of the successful transplant was a sensation. Even though kidney, lung, and liver replacements already had been performed, transplanting a heart was symbolically a bigger story, and it changed the way people thought about life and death.

            With improvements in surgical techniques, new ways to preserve human organs out of the body, and the development of highly effective immunosuppressant drugs, patients with conditions that not long ago meant certain death can now have hope. Unfortunately, hope is as much as many of them ever get, because the demand for hearts, kidneys, livers, and other organs far exceeds the number available for transplant.

The outlook for a solution to the organ gap is not good. Owing in part to dramatic increases in organ-destroying diseases like diabetes and high blood pressure, the number of people in need of an organ transplant has ballooned. Meanwhile, the national rate of organ donation from dying patients has been flat for two decades.

            The Rochester area is an exception. With a 62 percent increase from 2000 to 2001, Rochester leads the nation in per capita organ donation from dying patients. Still, hundreds of local would-be organ recipients await transplants at Strong Hospital.

            Nationally, nearly 80,000 people are on the transplant waiting list --- more than 50,000 of them in need of a kidney. A report by the federally contracted United Network for Organ Sharing (UNOS) shows that during the 1990s, the waiting list for transplants in the US almost tripled in size while the number of transplants in the same period grew by less than 50 percent. More than 6,000 patients died in 1999 while waiting for transplants.

            People suffering from conditions that a transplant could alleviate are living in an agonizing in-between period in medical history. The know-how is there to save lives, but the essential biological components are in short supply. Meanwhile, stem cell research, tissue engineering, and other emergent technologies hold the promise of made-to-order body parts and other wonders.

            "We're in the midst of a medical revolution that some say is as significant as the industrial revolution or the invention of the printing press," says James Warren, editor and publisher of Transplant News, a national newsletter for professionals working in organ transplant and related fields. "I wouldn't say anything is off limits. It's only a matter of how much it will cost and what society will accept."

            But the promised miracles of tomorrow are still out of reach, and people in need of transplants today find their hopes circumscribed by stark supply-side statistics. Somewhere around 14,000 people nationally die each year under conditions that make their organs viable for transplant --- they suffer brain death in a hospital while their heart keeps beating. Less than half of these patients become organ donors.

            There has been a marked rise in the number of living organ donors willing to give a kidney or part of their liver to help someone else survive or get off dialysis (a 16.5 percent increase in 2000 to a total of more than 5,500). Still, the gap between supply and demand continues to widen. The average waiting time for a kidney transplant in Rochester has doubled in the past four years.

"We feel like salmon swimming upstream," says Bill Morris, executive director of the Finger Lakes Donor Recovery Network, one of 59 Organ Procurement Organizations (OPOs) nationwide promoting organ donation and coordinating organ allocation. The Finger Lakes OPO area includes Rochester, Syracuse, and part of the Southern Tier. As elsewhere in the nation, the pressures on patients and transplant professionals here are fierce. "We see for the first time desperate people advertising in the paper for a kidney," Morris says.

            Alongside the dilemma of organ supply is the potentially explosive question of who gets the organs that are available.

            "There is no [allocation] system that is perfectly equitable," says Martin Zand, medical director of the kidney and pancreas transplant programs at the University of Rochester Medical Center. "There are published studies that if you are poor you may not be referred as quickly by your doctor for a transplant," Zand says. However, he says, for kidney transplants, once a patient is in the system, the allocation is very fair. "It doesn't matter if you are president of the United States. No matter how prominent you are, you cannot skip to the head of the list."

            Kidney allocation is governed by a national policy. (Each of 13 transplant regions nationwide is able to decide subtle differences in policy. New York State, one of the 13 regions, has three OPOs and several transplant centers --- including those at Strong Hospital and University Hospital in Syracuse.) Most kidneys stay in the OPO area in which they are donated. Only if a kidney matches perfectly to a potential recipient on the national waiting list is it rushed by jet to wherever the patient is.

            In addition to being matched to organs according to blood type and genetic immune response, every transplant recipient must pass a third type of matching --- the "serum cross-match." This tests whether a specific recipient will have an immune reaction to a specific donor kidney. If this test is positive, it means the recipient's serum would attack the blood cells from the donor and quickly destroy the kidney.

Until patients with kidney failure get their turn on the waiting list and have a negative serum match with a donor kidney, they wait... and sometimes wait and wait. "People can live on dialysis 20 to 30 years," says Zand.

            A better alternative for more and more patients is to find a living donor. Of course, the increase in organ donation from healthy living people has engendered its own set of issues and ethical dilemmas.

            The first successful kidney transplant, at Boston's Brigham Hospital in 1954, involved a living donor --- one identical twin donating to the other. Kidney transplants from dying patients didn't happen until 1962. Transplants from living, closely related donors were long favored simply because it was easier to get a genetic match between donor and recipient.

            As immunosuppressant drugs improved, making rejection of transplanted organs by the recipient's body less of a problem, transplant teams found success with "emotionally related" donors and recipients --- typically transplants from one spouse to another. As demand for organs continued to rise, transplant centers began to accept donors with various kinds of relationships to the recipient --- old friends, associates from work, even members of a church or community group who barely know the recipient.

            While donating a healthy kidney is deemed to be relatively safe for the living donor, some aspects of living organ donation make hospitals and transplant professionals jittery. Suppose a boss put pressure on a subordinate to be a donor.

            And the pressure can come the other way, from a would-be donor who wants to establish some kind of relationship the recipient does not welcome. "There are even people who want to have visiting rights," Zand says. "I'm not making this up. People have called and said, if I donate a kidney can I have visiting rights?"

Given the need for organs, there is significant pressure on transplant centers to relax relationship requirements between donors and recipients. Last winter, a case in the Rochester area generated headlines. Former television personality Pete Dobrovitz ran a newspaper ad for a kidney and received one from a Wayne County man, Steve Aman, who was quoted as saying organ donation was a step along a path of his personal growth. In that case, Strong Hospital declared its emotional relationship requirement satisfied because both donor and recipient were graduates of the same high school, even though they were several years apart and didn't know each other.

            Why would Strong care whether the two had a relationship? One motivation is to maintain the unquestioned fairness of organ distribution. In some ways, advertising for an organ is potentially as inequitable as bidding for one might be. "Just as not everyone has equal financial resources to purchase a kidney from someone, not everyone has the resources or ability or personal appeal to mount a media campaign," Zand says. "Certainly individuals who have access to the media, who are photogenic, who are articulate have an unfair advantage."

            A number of transplant centers allow "anonymous stranger" organ donations, where donors give organs much as they give blood, with neither the donor nor the recipient knowing who the other is. These programs allocate kidneys the same way they do cadaver organs --- according to blood type, time on the waiting list, and a negative serum match. These programs might even advertise and promote organ donation --- not for individual patients but on behalf of their patients at large.

            But there is a logistical problem with anonymous donor programs, Zand says. Only one in every nine prospective donors actually follows through, compared to a much higher follow-through when an emotional relationship is involved, says Zand. The process of screening prospective donors is so time consuming that many transplant centers simply do not have the resources to invest, given such a low rate of follow-through.

            Despite the ethical and practical qualms, Strong is moving toward starting up an anonymous donor program "within the next year or two," Zand says.

Although the distribution system for kidney transplants appears to be widely accepted as fair and rational, there is more controversy surrounding the allocation of cadaver livers. On paper, liver allocation is scrupulously unbiased. When baseball great Mickey Mantle received a liver transplant in 1995 many people assumed his celebrity had gotten him preferential treatment, says James Warren of Transplant News. Wrong, he says. Mantle's priority on the waiting list was based on a scoring system designed to measure how sick he was.

            "The United Network for Organ Sharing runs a blind list and when a matching liver becomes available they tell you who is next on the list, according to a fairly complex point structure," Warren says. "Mantle was on the list three days, which was about average for someone in his condition."

            Mantle died within two months of his transplant. This reveals a major problem with the liver allocation system, says Bill Morris of the Finger Lakes Donor Recovery Network. "If there was a mistake made with Mickey Mantle, it was in trying to transplant somebody who was too sick," says Morris. "Mickey Mantle had cancer of the bile ducts. This is a disease with a very poor outcome. Chances are that if a patient is transplanted the organ is going to be buried with the patient. Is that the best use of the resource? No, it is not."

            United Network for Organ Sharing recently adopted a new scoring system called MELD/PELD. Based solely on laboratory analysis, the system is intended to give a finely tuned assessment of the severity of the condition of a patient with end-stage liver disease, one that may help lead to better outcomes. "We'll see how it works," says Morris.

Rather than distract the public with arguments over allocation, Bill Morris argues that transplant professionals should do all they can to promote an increase in organ donation. Morris points to the new statewide Organ and Tissue Donor Registry which provides organ donor registration materials to New Yorkers when they obtain or renew a driver's license.

            "The registry enables organ procurement programs, hospitals, and tissue banks to tell the family of a potential organ donor that their loved one was a registered donor --- information the family may never have talked about," Morris says. "If they see the [organ registry] card with the loved one's signature, which we can pull up electronically, it helps them understand."

            Family consent is the linchpin of organ donation. Even though signed organ donor cards can have the weight of a legal document, transplant centers in this country rarely go against the wishes of the potential donor's family. The possibility of negative publicity is too great a risk in a realm where public confidence is tenuous to begin with.

            Even when a dying patient has signed an organ donor card, families in the Intensive Care Unit waiting room refuse to allow their loved one's organs to be taken 40 to 50 percent of the time, says James Warren.

            "The reasons are complex," Warren says. "The bottom line is that people don't trust the system, especially if they are a minority. It's a manifestation of the health care they get in general. They think that in the health care system people are not going to treat them fairly." Warren sees this as particularly poignant because, he says, families who allow loved ones to be organ donors do better in the grieving process. "If their loved one donates organs, five people can live. That gives them some hope --- something mentally to hang on to --- and their lives are better."

To address the agonizing human dynamics around organ donation, the Finger Lakes Organ Procurement Network has been testing an experimental program. Under the initiative, mothers of past organ donors help support families whose loved one is in an intensive care unit with no hope of recovery.

            "They work with families not about organ donation, but about how they are going to survive," Morris says. "They will get them a cup of coffee, or offer a calling card to phone a family member in another state, or give them some toiletries. And they will let the family know that the people in the hospital waiting room with them have been through a similar tragedy and that in some way they are going to get through this." These mothers have helped improve the consent rate of families of prospective organ donors from 40 or 50 percent, the national average, to 85 or 90 percent locally, Morris says. The program is expected to roll out to other areas of the country.

            Despite the promise of this type of program, Transplant News'James Warren believes organ donation rates will not improve without powerful incentives and even legal muscle. He refers to countries like France, where a system of "presumed consent" holds sway and individuals have to actively opt out not to be deemed organ donors. A less stringent approach for the US, he says, might be a system in which "you've got to be in it to win it" --- only registered organ donors can receive organ transplants.

            Even more effective than legal compulsion would be some form or financial incentive, Warren says. "In the entire transplant world," says Warren, "everybody's making money --- the organ procurement organization, tissue banks, hospitals, transplant centers, transplant surgeon. The only part of the equation where nobody makes any money is the donor family."

            Financial incentives could be offered in a way that does not undermine the altruism of organ donation, says Warren --- like a $2,000 payment for funeral expenses, which could be diverted to charity if the family preferred. Martin Zand worries that introducing any form of remuneration for living or dying donors would undermine the donation process. "How can we recognize the donors with something that is meaningful but not an inducement to sell your organs? I don't know how to do that."

            Zand is also skeptical about the power of medical technology to solve the dilemma of organ supply and demand. "I think xenotransplants [transplanting organs from genetically engineered animals into humans] and tissue engineering are a long way off for kidneys and livers, which are incredibly complex organs."

            For many kidney patients the best hope may be a living donor, says Zand. But, he says, it is not an easy path to pursue.

            "One of the hardest things for someone who has kidney disease and is on dialysis is to ask someone they know to donate a kidney," Zand says. "It is incredibly difficult. But every time we hear of someone who has asked their friends, their coworkers, or their community or church group, they are overwhelmed by the generosity of people they have no great personal connection with."

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