Bay Area Reporter - August 31, 2001
Jeff Getty, Survive AIDS Writers Pool

Already Kramer has appeared in Newsweek magazine, the Pittsburgh Post Gazette (including a positive editorial in favor of transplants for those who are HIV-positive) and ABC's Nightline (aired August 29). So far the reports have been positive featuring Kramer both as activist and in survival mode. For this reason Kramer's transplant may do more to help open the door for HIV-positive transplants than any previous research or results. Though none have spoken out publicly against the Kramer transplant, confidential sources are reporting a high level of discomfort among the traditionally conservative organ transplant community.

One obvious concern, expressed by this author as well, is the worry that if the transplant goes badly it could set back access for others with HIV. But in the history of organ transplantation, experimental transplants were always part of the equation to broaden patient populations that could benefit. As was mentioned in the recent Pittsburgh Post Gazette editorial, if doctors did not perform experimental procedures û pushing the envelope û we would still be allowing transplants for a very small and limited group of candidates such as those who received livers in the 1970s.

A second concern, relayed by sources following organ transplantation for those who are HIV-positive, is that the organ transplant community is worried about possible bad press and its effect on organ donation. It is known that donors can and will curtail organ donations following negative transplant news stories. But this is nothing new either. When early reports about HIV-positive patients getting transplants first generated news back in 1997, a prominent Harvard physician told reporters that he feared donations would drop if people with AIDS received transplants. Such concerns were also voiced in the 1970s about blacks both receiving and donating organs, and a debate continues to this day whether or not inmates should be eligible for transplant. Yet organ donation numbers remain steady if not climbing.

Survive AIDS asked Larry Kramer to comment on his health problem and liver transplant candidacy. In his own words: "I am having this transplant because I want to live longer. I have unfinished work to finish, principally my very long novel about the history of America and the history of this plague, The American People, which has a bunch of years' work yet to get it up to where I want it to be. There is no way I can finish it in the predicted year of life left in my liver.

"I am taking a gamble I am going to come through this okay and will have many more than that one year to live. I'd also like to let other coinfecteds see that there is quite possibly a very decent alternative to a slow death from liver failure which had not been available to us until very recently.

"Everyone seems to be very nervous about this transplant issue, and anything to do with the liver, tiptoeing around it rather than discussing it. For instance, I am on adefovir, an experimental drug for hepatitis B. I am doing really great on it. My hep B viral load has gone from zillions to just about undetectable. My ascites (abdominal fluid retention and bloating) does not appear to be reaccumulating so I look like I am carrying triplets. There have been absolutely no side effects that I have had in the over a year I've been on it. And yet I am the only person in the NIH trial for this drug. A second person has just enrolled. The NIH can't understand it. My nurse coordinator said, 'I can't understand why people aren't standing in line to get this drug.' But something, I think, about the word 'liver' scares everyone. Well we have to get over this, like we have in confronting HIV/AIDS.

"Sure, I'm scared. I say I'm not and most of the time I'm not. But I have little panic attacks now and then, usually late at night up here in the country when I'm alone. I fantasize the operation, how harsh and invasive it is, and how I might not live through it. But then I have to constantly remind myself: I am finally fighting for my life. I haven't had to do that up to now. I've been really lucky with my HIV. I never took the cocktail and my HIV viral load is 700 and my T-cells are 300+ and pretty much always have been. I've only ever taken AZT and Epivir, both of which I still am on. (However, it was my developing resistance to Epivir that caused my hepatitis B, previously pretty dormant, to fulminate into the liver disease that now is requiring a new liver. Talk about side effects!)

"But I've been spared all the awful opportunistic infections and physical disabilities that all my friends had. Yes, I've been very lucky that I have lived to a time when there are more and more options. That's just sheer luck. Now it's my turn to face the possibility of oncoming death. Or rather to fight like hell to overcome it. I hear that the usual anti-Larry chat is starting up: I should shut up about this because livers are so scarce, etc. I'll ruin it for everyone else, especially if I die. My response is: if you don't put the battle on the table there's no way to fight it. It's how I've always operated. If I die I know Dr. Fung will learn something from me and I hope that people will fight for him to learn more and more. I'm accused of doing this for publicity. Fucking A I'm doing it for publicity. If we don't find ways to get more livers, then this next plague that is already starting to kill PWAs won't have any hope at all."

In recent months Kramer's health has been stabilizing after he joined an NIH trial to study adefovir, a new anti-hep B drug. As Kramer's health improves and he gains strength, the better his chances for survival. However, Kramer has been told by doctors not to expect adefovir to repair his significant liver damage such that he would no longer need a transplant.

So far, Kramer enjoys support among the AIDS community and its activists. Jules Levin, a New York-based AIDS and hepatitis C activist from the National AIDS Treatment and Advocacy Project, said the he was very much in favor of the Kramer transplant and that he thought the publicity would have a positive affect. Brenda Lein of San Francisco's Project Inform said, "I don't think there is any controversy here, this is a situation where a man is receiving a medically indicated procedure."

Due to the work of Survive AIDS, Project Inform, University of California, San Francisco Drs. Peter Stock and Michelle Roland, and San Francisco Assemblywoman Carole Migden (D), the UCSF Medical Center has developed an important new protocol to study HIV-positive organ transplantation.

The pilot study is funded and well under way. Already a handful of livers and kidneys have been successfully transplanted. The UCSF pilot study was successfully aimed at starting a national study, which is under way with 11 sites at various stages of readiness.

Regarding the Kramer transplant, Stock, a UCSF transplant surgeon, said, "Pittsburgh has been the pioneers, they know when they can do the transplant and when they cannot. If he meets the requirements for transplantation, he deserves the same chances as other patients."

Regarding concerns about organ donation Stock remarked, "The public in general à I hope that they are educated enough to understand. No single group should be singled out to be excluded. It is a very generous gift to make. I hope we are appropriate stewards of these donations."

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