HIV patients boost demand for transplants
Published Tuesday, Dec. 11, 2001, in the San Jose Mercury News
BY CORDULA TUTT
Mercury News
Larry Kramer might die soon -- unless the playwright and AIDS activist can get a new liver.
Kramer, 66, suffers from liver disease, possibly caused by his infection with the human immunodeficiency virus. Kramer, an AIDS patient, would have been considered a poor risk for a liver transplant until recently. But now he is on a list to join a trial testing transplants for HIV-positive patients.
The trial is a sign of just how much the AIDS epidemic has been changed by anti-viral drugs that add years to patients' life spans. Now these patients live long enough for their organs to fail -- and doctors are wrestling with how to handle this new complication.
``It is a gamble,'' Kramer said. ``I might have six more months, or six to 10 years more. But I think this is a gamble that is worth it.''
The study, chaired by doctors at the University of California-San Francisco and involving 14 transplant centers around the United States, is being watched closely by AIDS experts and transplant surgeons alike.
Some doctors consider such transplants too experimental for HIV-positive patients, and others worry about a backlash driven by anti-AIDS bias or fears of greater competition for donated organs. And, until recently, mortality rates for HIV were too high for patients with the virus to be considered for a transplant list -- organs are scarce, and are usually reserved for patients who seem most likely to live a long life.
But now, the outcome of the transplant trial is crucial in an era when the battle against HIV has shifted. As drugs keep the virus in check, HIV patients are living longer, turning the struggle against the virus from a fight against death to a fight for a long, worthwhile life.
New role for transplants
Liver cirrhosis like Kramer's may soon become a leading cause of death for people with AIDS, experts say. As a result, transplants will become increasingly important for HIV patients, they say.
The shift in the 20-year AIDS epidemic led to the creation of the transplant trials, which started last year.
The clinical trial is headed by transplant surgeon Dr. Peter Stock and HIV specialist Dr. Michelle Roland, both of UCSF. The initial impetus for the study came from Survive Aids, an AIDS advocacy group in San Francisco.
Stock said UCSF hopes to perform five to 10 kidney transplants and three to five liver transplants per year during the three-year trial. Nationwide, the goal is to perform 200 to 300 kidney transplants in three years and 100 liver transplants, he said. After their transplants, patients will go through a five-year follow-up.
Joining the trial gives an HIV-positive patient access to the operating room only -- HIV patients have no special priority in the trial.
``They have no advantage or disadvantage to get an organ,'' Stock said. ``We cannot give any advantage to some patients.''
The issue of access to organs is key. Donated organs are scarce. For every available organ, there are three people waiting for a transplant. According to the California Transplant Donor Network, the median waiting time for a kidney is 962 days; for a liver, 515 days; and for a heart, 209 days. (At the median, half will wait less, half longer.)
But numbers can differ greatly from region to region.
By mid-November, the Richmond, Va.-based United Network for Sharing Organs, a non-profit organization that maintains the nation's organ transplant waiting list, reported about 50,000 patients waiting for a kidney in the United States, including 4,557 in California. More than 18,000 patients need a liver, and in California there are about 2,035 such patients.
The scarcity of organs has kept many HIV-positive transplant patients out of the operating room. People with HIV have been excluded because their life expectancy used to be short, and because the immunity-suppressing drugs needed to keep the body from rejecting the new organ could accelerate the multiplication of the virus and threaten their health.
HIV-positive people are also excluded from being organ donors.
Guidelines established
The Virginia organization, which has published guidelines for transplants, now says HIV-positive organ recipients should not be treated differently from others. Spokeswoman Anne Paschke said: ``Testing for HIV is a precondition for being either a donor or recipient. A person with HIV but no symptoms should not necessarily be excluded from getting an organ, but this person should be advised that there is an increased risk'' to their health due to immunosuppressive therapy.
Homosexuality or other behaviors should never influence someone's eligibility for an organ, she said.
Similarly, the California Transplant Donor Network said HIV status should not influence a decision. Spokesman Von Roebuck said: ``The social background should not play a role. The waiting list is based on medical criteria. But because of that, there is definitely room for such a clinical trial.''
Kramer, the patient awaiting a new liver, said that initially he felt guilty because there are so few organs available for a transplant. ``But now, I feel: Why should I not be allowed to have one if I might be able to live 15 years longer?'' he said. ``I have rights, too, like an uninfected and heterosexual person.''
UCSF surgeon Stock said he fears some opposition from others in need of organs. ``There are a lot of people waiting,'' he said.
There are indications that HIV patients might do as well as other recipients, Stock said. ``We ask, how long are people going to live in this trial? Some other patients are more sick than the HIV patients. Not emotion, but data, is necessary.''
The issue is as complicated for doctors as it is for donor networks.
Getting on the list
Despite the UNOS guidelines, there are still very few programs willing to put people with HIV on a transplant list, according to one transplant specialist with experience helping HIV patients.
``HIV patients are being relegated to the end of the line,'' said Dr. John Fung, the chief of transplant surgery at the Thomas E. Starzl Center at the University of Pittsburgh. The center pioneered liver transplants and has done more transplants for HIV patients -- four kidneys and eight livers since 1997 -- than most other facilities. Fung has accepted Kramer as eligible for an operation, after Kramer said he was turned down for transplant surgery at another facility.
Fung has few good words for fellow transplant surgeons. ``Many colleagues stand in the way of progress. This is clearly a very effective way to treat'' HIV patients, he said. His criticism touches on more than medicine.
``There is homophobia,'' he said. The 12 HIV-positive transplant operations that have been conducted in Pittsburgh since 1997 have been a success, Fung said, although two of the liver patients have since died.
The two deaths were not related to HIV or non-compliance with drug therapy after the transplant, Fung said. The patients who received kidney transplants are still alive.
Stock said he agrees that organ transplants should be more accessible for HIV patients. But he disputes some of Fung's accusations against the medical community.
``I reject that transplant centers do it out of homophobia,'' he said of the idea that centers might reject HIV patients who need transplants. Data about the long-term results of organ transplants for such patients is still needed, he said.
And there is another concern -- the procedure is still new.
``But everyone at UCSF is willing to do it,'' Stock said.
Activists watching study
Leading AIDS activists are watching closely. Jeff Getty, an activist and medical pioneer who made headlines when he tried treating his own HIV infection with a bone marrow transplant from a baboon, sees this trial as a big success for HIV-positive patients.
Although he appreciates the work of the UCSF team and Fung's team in Pittsburgh, he finds that many other surgeons are still reluctant.
``This has not been a pretty battle. It is a circle of death, and we have come a long way. The transplant community has been very homophobic and very conservative,'' Getty said.
But organ transplants on HIV patients are still uncharted territory for the AIDS community and many doctors. The project at UCSF will, in the beginning, favor HIV patients who are relatively healthy otherwise, Roland said.
Roland's work is focusing on drug interaction and medication, trying to prove that drugs given to ward off organ rejection in transplant patients do not accelerate HIV if people stick to the right treatments.
``It is not important how someone acquired a disease; it is important how they take care of themselves,'' Roland said. She feels that a successful trial would change the approach of many transplant centers around the country. ``The moral obligation to do it will be stronger after the trials,'' she said.
Experts in medical ethics agree that the clinical trials are key to addressing whether HIV-positive patients should receive transplants. Medical ethicist Art Caplan, from the University of Pennsylvania in Philadelphia, said concerns will diminish only if a majority of HIV-positive transplant patients survive at least a year.
``It would be unethical to discriminate because of HIV. But the concern about the general medical condition is right,'' Kaplan said. ``The survival rate is an essential argument. It is not only done to save the most life, but also the best quality of life.''
Caplan otherwise makes no distinction between HIV patients and people with a history of alcohol or drug abuse, or any disease that makes organ transplants necessary. ``Liver recipients most likely have tried to kill themselves, have hepatitis C and therefore are probably heavy drug users, drink alcohol or had a car accident because they were maybe driving too fast,'' he said.
This had not kept people from donating organs. And what has proved to be important, Caplan said, is that organ recipients have a good chance of survival.
Fung said HIV patients would probably remain a small percentage of transplant patients. ``At the peak, it might be 300 to 500 liver candidates per year with HIV,'' he said.
Fung said he would also like to see more people volunteer to donate their organs if they die. People with a history of drug abuse -- and therefore at higher risk of carrying the hepatitis virus and transmitting it to the recipient of their organ -- need not be excluded as donors, he said. Patients awaiting an organ who also have hepatitis could choose to take the infected organ if no other is available, he said.
In the meantime, as he waits for a liver, Kramer is doing what he has done in every stage of his decades-long campaign for better treatment for HIV patients -- putting his personal fight into a broader perspective.
``We have to fight for this like we had to fight to get AIDS drugs,'' he said. ``That is part of why I do it. It is possible to survive.''
Contact Cordula Tutt at science@sjmercury.com.
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