or most Americans, pledging to become an organ donor is as easy as going to the DMV. But a deadly discrepancy remains between the number of Americans waiting for an organ and the number of organs that become available for transplant each year. Close to 23,000 organs were transplanted last year, but the waiting list for organs rose to over 76,000. Ten years ago those numbers were 15,000 and 22,000, respectively.

Recognizing a crisis, last April brand new Health and Human Services (HHS) Secretary Tommy G. Thompson announced a "Gift of Life Donation Initiative" to increase organ donation. The initiative includes a program through which HHS partners with companies and employee groups to disseminate information on donation in the workplace; the unveiling of a model donor card; the organization of a national forum on donor registries; and the announcement of $3 million in new grant money to support innovative approaches toward increasing donation. In an HHS press release Thompson stated, "This initiative sets out to aggressively increase organ donation throughout America. It lays the foundation upon which we can create the most comprehensive effort yet in our nation regarding donation and transplantation."

Few would argue that a solution is needed for the acute shortage of organs, but the issue is complicated by a wide variety of factors, including questions of federal responsibility, ethical dilemmas, advances in medical technology, and incentives for promoting donation. With its expansion into the population-based public health arena, the topic of organ donation has begun to influence the career path of many a public health professional. Here are three alumni of the Harvard School of Public Health who have become immersed in the issue in quite different ways.

THE FEDERAL BUREAUCRACY
"When I came here i was thrown into the middle of a maelstrom," laughs Miguel Kamat, M.P.H.'91, medical officer in the Division of Transplantation, Office of Special Programs, Health Resources and Services Administration (HRSA), an agency of HHS. A radiologist who had worked previously in HHS national programs in mammography quality, food safety, and minority health, Kamat arrived at his current job in May 1999, just as a decade-long process to define the federal role in overseeing the Organ Procurement and Transplantation Network (OPTN)--a nationwide system by which organs are procured from donors and allocated to recipients--was coming to a stormy end.

When the OPTN, currently operated by the United Network for Organ Sharing (UNOS) through a contract with the federal government, was initially established by the National Organ Transplantation Act in 1984, the network's rules and requirements were voluntary. But in 1986 Congress passed Section 1138 of the Social Security Act--which states that in order to qualify for Medicare and Medicaid reimbursement, transplant centers and organ procurement organizations must be members of the OPTN and follow its rules; this change "necessitated a regulation to define a mechanism whereby the standards used by a private group, the OPTN, could be reviewed and rendered enforceable by the Secretary. That regulation, to make a long story short, was published in April 2, 1998 and amended in October 1999," says Kamat, who was awarded one of his agency's highest awards, the Administrator's Special Citation, for his instrumental role in the regulatory development process.

Known as the "Final Rule," the regulation "establishes medical need, rather than geography as the major criterion for the allocation of donated organs," according to a 1999 HHS report to Congress. Previous OPTN policies giving preference to local donations often resulted in uneven distribution. For example: "For a given medical condition, a person in New York may die waiting for an organ, but someone in New Jersey may get it because in New Jersey fewer people are listed in critical condition than in New York," says Kamat. The Rule sought to alleviate the problem by requiring that equity and utility be considerations in organ allocation. Nevertheless, the Rule "aroused a lot of (a) controversy and (b) misconceptions," he notes. "People alleged that a national list was required, that the Secretary was practicing medicine." HHS refuted these claims, and further public comment followed.

In 1998 Congress directed the Institute of Medicine (IOM), an independent organization affiliated with the National Academy of Sciences, to review several aspects of the Final Rule. The IOM issued its report in July 1999. "In general the IOM report validated the concerns that gave rise to the Final Rule and the approaches taken in the Rule," says Kamat, quoting from the regulatory preamble. "And at the same time Congress directed HHS to meet with representatives of the transplant community." Out of these efforts came the amended Rule, which went into effect in March 2000. "Basically the main goals of this rule are to require that the listing of patients and the allocation of organs be based on objective, medical, scientifically based criteria."

Kamat clearly relishes public policy-making. He rattles off the history of the Final Rule with a speed that indicates he's exceedingly familiar with it, and he attributes his ability to function in federal government bureaucracy to basic skills he acquired during his time at the School. An M.P.H. is a much-respected credential for a clinician to have in the course of federal work, he asserts. When asked about Secretary Thompson's donation initiative, Kamat says that increasing donation "clearly is the ultimate solution to this problem--then there won't be an issue of who gets the organ." However, he notes that increasing donation won't be easy: "It's a very intractable issue because it involves psychological behavior… interacting with grieving families, getting them to consent."

NIGHT OF THE BLOODY TRANSPLANT
Walter Robinson, M.P.H.'94, former associate director of the Pediatric Lung Transplantation Program at Children's Hospital, is interested in "the fringe and the big picture" of how organ transplantation "plays out in the cultural landscape." Robinson currently directs the Medical Ethics Fellowships and the Program in the Practice of Scientific Investigation both at Harvard Medical School and sits on the UNOS ethics committee. He believes that popular perceptions of organ transplantation have an effect on individuals' willingness to donate or receive an organ. "There's a lot of misunderstanding, and that's a problem," he remarks.

Input the word "transplant" into the Internet Movie Database (www.imdb.com), says Robinson, and your search will yield quite a few movie titles. According to Robinson, movies about transplantation fall into two broad categories. The first is the slasher film, in which someone is grievously injured and then put back together. He notes that about 25 of these films have been produced in the last 20 years. Then there are movies in which a loved one dies and his or her organs are transplanted; the survivor subsequently falls in love with the recipient or is haunted by the ghost of the donor.

"I don't think that these popular movies perfectly represent what's going on in the American landscape," says Robinson, "but are they preventing people from signing donor cards?" Determining what affects attitudes about organ donation is an important area of inquiry, because one of the most difficult issues in cadaveric organ donation is the reluctance of family members to agree to donation even though an individual has indicated his or her wish to be a donor. "Coma probably set transplantation back five years!" Robinson remarks. He also notes that the authors of novels, short stories, and memoirs dealing with organ donation show toward the subject "a discomfort, a sense of mysteriousness… maybe a little ghoulishness."

It's worth noting that baffling images of organ donation continue to appear on network television. Ads for Rob Schneider's new movie The Animal show a young man who is transformed--after an accident necessitates that his own organs be replaced with those from animals--from a social misfit into a man who behaves a lot like, well, an animal. And Jay Leno's monologue one night featured a joke about an Israeli man who received a heart transplant from a Palestinian. "He couldn't stop throwing rocks at himself," went the punch line.

What can counteract these unfortunate media images? Robinson points out that families of organ recipients and donors often become advocates of donation, dispelling the dominant myths. "They do it in a very smart way, by telling their own stories," he says. Perhaps truth can conquer fiction.

NOT MY KIDNEY ANYMORE
It's one thing to check a box on your driver's license offering to donate organs after your death. It's quite another to agree to have your own organ removed while you are still alive to save someone you love. Despite the complex psychological, emotional, and ethical issues involved in living donor transplants, last year their number increased by 16.5 percent, the majority of which were living donor kidney transplants.

John Newmann, M.P.H.'80, is happy to spread the word that, statistically, living donor kidney transplants are more often successful than cadaveric transplants. In 1993, after suffering rejection symptoms from an earlier transplant in 1987, Newmann received a kidney from his daughter Emily, who had recently graduated from college. "We were always quite close but this of course enhanced all that," he remarks. Newmann began dialysis in 1971 when his kidneys failed, and even before his transplant experiences he was a longtime advocate for kidney disease patients--his advocacy caused him to switch careers from international development to public health.

The Newmann family--John, his daughters Emily and Sara, and their mother Mary--have all written about the intense period of decision-making that preceded Newmann's transplant. Emily wrote in an American Kidney Foundation publication, "I can confidently say I made the right decision about an extremely difficult and vital dilemma, 'Should I donate my kidney to my father?'"

Newmann is clearly proud and touched when he tells a humorous anecdote about his living transplant experience--one he's surely told many times in the past eight years. A few days after their surgery, as Emily and her father were sitting around the table, he thanked her--not for the first time--for her kidney. "Dad, it's your kidney," she replied. "It's not mine anymore." A few weeks later, Emily laid her hand on her back where the kidneys are located, and quipped to her father, "Uh oh Dad, I think I'm missing your kidney!"

Newmann helped found the UNOS patient affairs committee and has served for the past year as the organization's vice president for patient affairs. He encourages dialysis patients to get information about living donation from as many sources as possible--doctors, donors and recipients, Web sites. Newmann also tells them how much better life can be afterwards: "You just can't imagine how much better you feel. Foods taste so much better; you don't have to watch your diet; you have more energy. All your systems are back to normal." And, he adds, "You get right back on that soapbox pretty easily."

Eman Quotah

Illustrations: Anne Hubbard