Organ Transplants: Interview with Jeff Getty, on Ending the Exclusion of People with HIV
Since about 1985 persons with HIV have been excluded from consideration for liver, kidney, heart, and other organ transplants--due to outdated information, inertia, and the idea that people with AIDS were about to die anyway so why waste a scarce organ.In fact, even ten years ago organ transplants to HIV-positive patients worked fairly well--even without any drug therapy to control the virus.1 Today the treatment and prognosis of HIV infection have changed greatly; but recent studies have not been done because persons with HIV are not allowed to receive transplants. As people are living longer, more deaths are occurring from organ failure, either HIV-related or otherwise. At the same time, perfectly usable organs from HIV-negative gay men are considered high risk and routinely thrown away.
Recently we spoke with Jeff Getty of ACT UP/Golden Gate, who is working to help patients overcome the automatic HIV exclusion and be considered for organ transplantation based on their overall medical situation, as is the case with others who need transplants.
AIDS Treatment News: What progress has been made?
Jeff Getty: People with HIV in the United States usually cannot get organ transplants at this time. However there are sites that are doing them. One is the University of California San Francisco Medical Center, with Dr. Nancy Ascher; they are doing liver transplants, but are having problems finding the money, so they can only do a few. The other is the University of Pittsburgh, with Dr. John Fung; they have already done numerous kidney and liver transplants for patients with HIV. But it is hard to get insurance to pay if they know the recipient is HIV positive.
That is the landscape today for organ transplantation in the United States. If you are known to be HIV positive, it is almost impossible to be considered.
ATN: Where is the problem coming from?
Getty: In this country organ donations are coordinated by UNOS, United National Organ Sharing, which has guidelines saying that people with HIV should not be excluded from organ transplants. The problem is not with them, but with the 266 regional centers that do organ transplantation in the United States and its territories. They have the rules against people with HIV receiving an organ.
In a couple cases the transplant centers brought in HIV experts to talk to them, and they learned that the disease has changed; this is why two centers are now doing transplants. But in the rest of the country, we are still being excluded based on information about the disease which is five or ten years old. This is what needs to be reformed. We need to get to these committees at the regional centers, and educate them and pressure them to change the rules.
We now know who is making the decisions on whether people with HIV get organ transplantation or not. It comes down from the surgeons. The advisory boards of the various systems, including the Veterans Administration, are made up almost entirely of organ surgeons who know little about HIV.
I am now fighting for three people who have contacted me; two need livers and one needs a heart. It is sad when you lose; and so far progress has been slow. All three of these people have problems with payment. It is very difficult to get the operation, and if you have no way to get it paid for, you are out of luck.
ATN: Do the insurance companies have written policies, or do they exclude people case by case?
Getty: They go to the regional center and try to find the written policy that excludes recipients who are HIV positive.
ATN: So if those centers would change, we would be in good shape to fight the insurance?
Getty: Right. Now we are in a double losing situation. The rules are against you, and the insurance company will always be against you.
If you go to a regional transplant center and they do not know you have HIV, they will test you before you get an organ. And in the case of Gary Bent in New York City, they tested him while he was in a coma, and then left him to die. (For more on this case, see Getty's article, reference below.)
ATN: What does the law say?
Getty: The 1968 Organ Transplant Act, passed by Congress, says that people who need organ transplantation must be informed of their options. The biggest problem we are having is that many people who need organs do not know they do. They might suspect, but they cannot even be evaluated for transplantation because they have HIV; sometimes doctors will tell them that if they were HIV negative, they would be a strong candidate. According to the law, patients are supposed to know their options.
ATN: What else needs to be reformed?
Getty: Despite the organ shortage--600 people a year die in the United States while waiting for livers--when gay or HIV-positive people donate, their organs are thrown away. A paramedic told me that they are trained to look for signs of gayness in a traffic accident or other situations where an organ will be harvested--such as rainbow bumper stickers or gay publications. Even if the donor is clearly HIV negative, the organ will not be used. The regional centers have these policies; and also UNOS will not take gay peoples' organs.
Over a year ago, UNOS promised us in a letter that we can have HIV-positive organs to use for HIV-positive patients. But so far no surgeon has been willing to do that operation--probably because of the payment issue. What insurance company will pay?
But the other reason we are not getting organs is that transplant surgeons do not know much about HIV and tend to be very conservative.
ATN: What is being done?
Getty: ACT UP/Golden Gate has formed a working group, which I am leading, to try to change the rules in various locations around the country. At this time we are focusing on the larger centers on the West and East Coasts. We are looking for people in other areas to join and help work on this.
In California now the battle is to get MediCal, the state Medicaid system, to consider paying for organ transplantation for people with HIV. If they do, then many of the insurance companies and other payer systems will follow. So we have asked them to reconvene their organ transplant advisory board, the Medical Committee for Anatomical Transplantation. We are insisting that experts on HIV disease and its prognosis be heard on these boards.
We are asking individuals who need organs to get in touch with us, because we are using media on this issue, and need people willing to be interviewed and tell their stories.
For More Information
For more background see Jeff Getty's 5000-word article, "The Politics of Organ Transplantation: People with HIV Are Left to Die," on the ACT UP/Golden Gate Web site, http://www.actupny.org/indexfolder/actupgg.html
You can reach Jeff Getty by leaving a message for him at ACT UP/Golden Gate, 415-252-9200, fax 415-252-9277.
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