San Francisco Chronicle - Sunday, December 30, 2001
Carol Ness, Chronicle Staff Writer

So the fact that the news service was wrong, and Kramer was actually doing well after a hard-won liver transplant, was even more joyous news to his friends -- and to others with HIV infections who might need a new liver, kidney or other organ down the line.

If Kramer, by far the most high-profile person with HIV to undergo a transplant, continues to thrive with his new liver, he'll be a very visible boon to efforts to persuade more hospitals to allow organ transplants in people carrying the virus that can cause AIDS.

"The corner was being turned, but Kramer is going to really raise the consciousness and add a lot of weight," said Jeff Getty of Oakland, spokesman for Survive AIDS, a San Francisco group pushing to tear down barriers to transplants for people with HIV.

Getty was in the spotlight himself in 1997 when he got a bone marrow transplant from a baboon to treat his AIDS.

Kramer, one of the world's original AIDS activists as founder of New York's Gay Men's Health Crisis, is at the cutting edge again with his transplant, performed Dec. 21 at the University of Pittsburgh Medical Center.

He was only the 10th patient with HIV to get a new liver at the hospital's huge transplant center since new drug treatments for the virus vastly extended lives.

Within five days, Kramer was out of intensive care and walking. By Friday he was being prepped for release, perhaps as early as this week, said RodgerMcFarlane, his friend and primary caregiver.

After early experiments with transplants in AIDS patients failed in the 1980s, HIV infection automatically disqualified people from organ transplants, except at Pittsburgh and in cases where patients weren't tested for the virus.

People with HIV didn't live long enough to justify giving them organs. And there were concerns that the immune-suppressing drugs given to prevent rejection of transplanted organs would let HIV rage unchecked or interact badly with AIDS treatments, or that the virus would interfere with a successful transplant.

But by the 1990s, widening use of a triple antiviral drug cocktail that keeps HIV in check radically altered the picture.

People who once would have swiftly succumbed to AIDS now are living long enough that accompanying diseases -- in Kramer's case, hepatitis B -- can progress to the point of destroying their organs. A high percentage of men with HIV also suffer from hepatitis. In addition, long-term use of the triple drug program can ravage the liver and other organs.

So the need for transplants among people with HIV is rising, according to Dr. Michelle Roland at the University of California at San Francisco. She is co-leader of a national study of transplants in HIV-infected patients that will provide the first rigorous analysis of outcomes to reluctant doctors.

As of mid-December, 18,701 people were on a national waiting list for livers, according to statistics compiled by the United Network for Organ Sharing, or UNOS, an organization in Virginia that links donor organs to patients and tracks transplants nationally. It is impossible to know how many might be HIV-positive, spokesman Joel Newman said.

The network has established guidelines for transplants for HIV patients, saying they should not be treated differently than others.

But so far, most transplant centers have not operated on an HIV-positive patient. Only 17 of 115 U.S. medical centers with liver transplant programs have performed them on infected patients, according to UNOS. In Northern California, UCSF is the only one.

Nationally, 94 HIV-positive patients received transplants between 1988 and 2000 -- 33 for livers, according to UNOS. Most have taken place since 1997.

Newman said confidentiality laws in some states mean those numbers might not be complete.

Among 4,954 liver transplants done in the United States in 2000, only 11 were among HIV-infected patients, according to UNOS.

Getty, who for four years has been pushing hospitals to perform transplants, and insurers to cover them, contends the reason HIV patients run into resistance is simple.

"Ultimately, who decides is the surgeons, and they do play God," Getty said.

"Some are very homophobic; they don't like gay men."

Dr. John Fung, who was one of Kramer's surgeons and has been a pioneer in performing transplants in HIV-infected patients, has agreed with Getty's view in print. He was out of the country and not available to comment last week.

Lisa Rossi, spokeswoman for the Pittsburgh medical center, said, "We're certainly not going to discriminate against these people because they have HIV. They have liver disease and they need a liver to survive."

But other doctors, and insurance companies, have said they are not discriminating. Among reasons for their reluctance to approve the transplants is that before Highly Active Anti-Retroviral Therapy (HAART), transplants didn't save AIDS patients and no large-scale studies exist showing their effectiveness now, Roland said.

Roland is the lead investigator for the first national study of liver and kidney transplants in HIV-infected patients, which is just getting under way.

At UCSF, doctors have transplanted four livers and eight kidneys in its study over the last two years. One patient died but the rest are doing well, Roland said.

Among the 10 liver transplants, including Kramer's, performed at Pittsburgh since 1997, eight recipients are still alive, Rossi said.

The national study will be important because it will provide bigger numbers, Roland said. As an HIV doctor, she hopes it will provide the kind of information about survival and drug interactions that doctors say they need to start providing infected patients with transplants.

Health insurers are another set of gatekeepers. The average liver transplant costs $235,000, according to Oakland's California Transplant Donor Network, and many health plans refuse to cover transplants in HIV-infected patients because they consider the treatment experimental.

Kramer was lucky, because his health plan paid.

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