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 Talks to HIVandHepatitis.com ACT UP Founder Discusses His Need for a Liver Transplant Liver Failure Caused by Hepatitis B- and HIV Complications |
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By Jeff Getty Survive AIDS Writers' Pool Reprinted Courtesy of HIVandHepatitis.com
Already articles have appeared about Kramer in Newsweek, The Pittsburgh Post Gazette (including a positive editorial in favor of transplants for HIV positive patients) and ABC's NightLine (aired Wednesday, 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 transplants for HIV positive patients than any previous research or transplant results. Though no one has 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 to organ transplantation for others with HIV. But in the history of organ transplantation, experimental transplants were always part of the equation to ever-broadening patient populations that could benefit. As mentioned in a recent Pittsburgh Post Gazette editorial, if doctors did not perform experimental procedures that push the envelope, we would still be allowing transplants for only 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 HIV positive patients, 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 news stories about unsuccessful transplants. 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 1970's about blacks both receiving and donating organs, and a debate continues to this day concerning whether or not inmates should be eligible for transplant. Yet organ donation numbers remain steady, if not climbing. We asked Larry Kramer to comment on his health problem and liver transplant candidacy: Larry Kramer Speaks Out About His Health Situation "I am having this transplant because I want to live longer. I have unfinished work to finish, principally my long novel about the history of America and the history of this plague, The American People, which needs a year's more work yet to get it where I want it to be. "There is no way I can finish it during the predicted year of life left in my liver. I am taking a gamble that 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 [HIV/HBV] co-infected individuals see that there is quite possibly a decent alternative to a slow death from liver failure, which has not been available to us until 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 openly. For instance, I am on adefovir [adefovir dipivoxil], an experimental drug for hepatitis B. I am doing really great on it. My hepatitis B viral load has gone from "zillions" to just about undetectable. My ascites [abdominal fluid retention that causes bloating] does not appear to be re-accumulating so I look like I am carrying triplets." "There have been absolutely no side affects that I have had during the year I've been on it [adefovir]. And yet I am the only person in the National Institutes of Health (NIH) study. My nurse coordinator said, 'I can't understand why people aren't standing in line to get this drug.' "But something 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 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 fighting for my life. I haven't had to do that up to now. I've been really lucky with my HIV (infection). I never took the cocktail and my HIV viral load is 700 and my T cells are 300 plus and pretty much always have been. The only anti-HIV drugs I've ever taken are AZT [Retrovir] and 3TC [Epivir], both of which I still am on. 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 OIs [opportunistic infections] and physical disabilities that many of my friends had. Yes, I've been very lucky that I have lived to a time when there are more and more [treatment] options [for HIV/AIDS]. 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 Kramer chat is starting up--that 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 that [University of Pittsburgh surgeon] 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, than this next plague [liver disease] that is already starting to kill people with AIDS won't have any hope at all." In recent months Kramer's health has been stabilizing after he joined the NIH trial on adefovir, a new anti-hepatitis B drug. As Kramer's health improves and he gains strength, his chances for survival increase. However, Kramer has been told by his doctors not to expect adefovir to repair his significant liver damage to the point that he would no longer need a transplant. Support for Organ Transplantation in HIV Positive Patients 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 Advocacy Project (NATAP), said the he was very much in favor of the Kramer transplant and that he thought the publicity would have a positive effect. 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, UC Drs. Peter Stock and Michelle Roland, and San Francisco politician and California State Representative Carol Migden (D), the University of California San Francisco Medical Center has developed an important new protocol to study organ transplantation among HIV positive patients. The pilot study is funded and well under way. Already a handful of livers and kidney have been successfully transplanted. Regarding the Kramer transplant, UCSF transplant surgeon, Dr. Peter Stock said, "Pittsburgh has been the pioneer [institution]; they know when they can do the transplant and when they cannot. If he [Kramer] meets the requirements for transplantation, he deserves the same chances as other patients." Regarding concerns about organ donation, Dr. Stock remarked, "The public in general... I hope that they are educated enough to understand. No single group should be singled out to be excluded. It [organ donation] is a very generous gift to make; I hope that we are appropriate stewards of these donations." The UC pilot study was successfully aimed at preparing the way for starting a national trial. The national study is now underway, with 11 medical sites at various stages of readiness. |
