Larry gets a liver--but who's next? Author-activist Larry Kramer's high-profile liver transplant could help other HIV patients win access to expanded treatment. (Health).

Despite an erroneous Associated Press headline declaring writer and activist Larry Kramer dead after a December 21 liver transplant, on January 2 his best friend and primary caregiver, Rodger McFarlane, was gathering Kramer's belongings from the University of Pittsburgh Medical Center in preparation for Kramer's discharge that day.

"I'm packing the bags, and the car is ready to go," McFarlane said. "Larry's cogent. He's been working on the computer, walking up stairs. And he's been complaining. Larry's back!"

Kramer is not the first person with HIV to receive an organ transplant. But he is the best-known, and his case has brought attention to the controversy surrounding HIV-positive patients fighting for the right to receive transplants.

The main reason people with HIV are denied organ transplants "is homophobia and AIDS-phobia in the medical community and insurance industry," said Jeff Getty, a California activist who in December 1995 underwent an unsuccessful experimental baboon bonemarrow transplant to combat his HIV. "There's still the belief that giving an HIV-positive person a transplant is a waste of a good organ."

Margaret Ragni, a professor of medicine at the University of Pittsburgh who helps HIV-positive patients win transplants, agreed that discrimination has been an overwhelming obstacle. But, like most other medical experts working in this area, she conceded, "we can't honestly say how safe it is for the patients."

There is a valid medical concern about giving people with compromised immune systems the immunosuppressive drags every transplant patient must take to reduce the chances their body will reject the new organ, said Michelle Roland, MD, an assistant professor at the University of California, San Francisco, who in 1987 was a founding member of San Francisco's original ACT UP. "A lot of good things could happen as a result. But a lot of bad things could happen too."

So far, existing medical research is based on roughly 26 cases nationwide, said Peter Stock, a transplant surgeon at UCSF, where last year eight HIV-positive patients received kidney transplants and four received livers. While stressing that the number of cases remains too small to draw definitive conclusions, Stock said that "the initial results look encouraging. So far, in these patients we have not seen progression from HIV to AIDS."

Twelve transplant centers across the country are currently participating in an ongoing study funded partly by the National Institutes of Health that will monitor HIV-positive patients and their progress with organ Wansplants. Outside of this study, however, most people with HIV remain without access to organs. Even those like Kramer who get a shot at one will be proceeding at least as much on hope as on science.

"This was a life-or-death decision for Larry," McFarlane said of Kramer's liver transplant. "He knew he would die without it. But he also knew the operation itself might kill him."

McFarlane reported that Kramer was "still in a lot of pain." He was suffering the side effects of the drugs he was taking to help prevent his body from rejecting the new liver. But, McFarlane added, "he's done spectacularly well. He's both grateful and relieved. He's eager to go home."

For the next few months, home is an apartment in Shadyside, a district of Pittsburgh, where Kramer is working on a new novel while he recuperates. In addition to friend McFarlane, Kramer is sharing the apartment with his life partner, David Webster.

Once the famous rabble-rouser recovers, "you'll be hearing a lot from him" on the issue of people with HIV fighting for organ transplants, promised McFarlane. "He absolutely sees what he's been through as activism. He knows he was given a second lease on life, and he feels a tremendous responsibility to bring the issue to the fore."