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Chronic shortage of donor organs threatens people with HIV, 2004

Regardless of HIV status, transplant candidates face a daunting shortage of livers


"The organ shortage is a crucial problem. We need to keep working to expand the donor pool. I see people dying because they can't get organs."

by Tracy Swan

TAG's HCV/HIV Coinfection Project Director, Tracy Swan, explores the impact of the chronic organ shortage on HIV-positive people who have developed end-stage liver disease (ESLD) from coinfection with viral hepatitis (and other causes), and ideas to increase the supply of donor organs.

HIV and liver transplantation

End-stage liver disease secondary to hepatitis B and/or hepatitis C coinfection is creating an increasing group of HIV-positive candidates for liver transplantation. Regardless of HIV status, transplant candidates face a daunting shortage of livers, unless they are able to find a living donor. In 2002, more than 1,800 of the almost 17,000 people wait-listed for liver transplantation died. As of November 2004, a total of 17,465 people were wait-listed for a liver in the United States.

The MELD allocation system for liver transplantation
Since 2002, all deceased donor livers have been allocated by the MELD (model for end-stage liver disease) system. The MELD system was selected because it decreases mortality among candidates on the waiting list by prioritizing individuals with the most urgent need for transplantation, based on their risk of mortality within a three month period. An individual's MELD score is derived from three laboratory values (serum creatinine, serum bilirubin and international normalized ratio of prothrombin time).

MELD and HIV

MELD scoring is not disease-specific, although certain conditions are associated with poorer pre-transplantation survival. In some cases, an exception to standard MELD scoring has been created to reflect the established risk of death within a given patient population. Currently, HIV infection is not an exception to MELD scoring. There may be grounds for creating an exception to MELD scoring for people with HIV. A small, retrospective study of survival among HIV-positive people with hepatitis B or C-induced decompensated cirrhosis found that survival in this group was significantly poorer than that of HIV-negative individuals with decompensated cirrhosis, but MELD scores were not available.

An ongoing NIH-funded study, Kidney and Liver Transplantation in People with HIV, will evaluate the relationship of MELD scoring to survival of HIV-positive transplant candidates. If HIV infection is associated with an increased risk of mortality while awaiting transplantation, it is crucial to have these data to support an exception. In the meantime, a regional peer-review process has been created to consider applications for exceptions from each center. If the review board approves an application, then the individual will be granted a higher MELD score. If unapproved, centers may appeal or apply for a different MELD score.

MELD cannot address the underlying problem: a persistent shortage of donor organs. Since post-transplant survival worsens with higher MELD scores, and donor livers are in short supply, the MELD allocation system may result in a greater number of liver transplants in people who are less likely to survive transplantation, regardless of their HIV status.

HIV-positive transplant candidates face additional hurdles. Although the United Network for Organ Sharing (UNOS) does not consider HIV infection as a contraindication for organ transplantation, the decision to perform transplantation in an HIV-positive individual rests with individual centers; some will not transplant good candidates who are HIV-positive. Some insurers are reluctant to cover transplantation in HIV-positive candidates and consider it to be an experimental procedure, although transplantation in HIV-negative persons is an established, reimbursable procedure. Recent legislation in California and a ruling in Arizona may broaden access to transplantation for HIV-positive candidates. In September, California Governor Arnold Schwarzenegger signed legislation prohibiting insurers from using HIV status as the sole criteria for denying coverage of organ transplantation, and an Arizona judge recently ruled that the State Medicaid program cannot use HIV infection as the basis for refusing to cover organ transplantation.

Expanding the Donor Pool

TAGline talked with HIV-positive activist and liver transplant recipient George Martinez about his transplant, and how to expand the donor pool for HIV-positive people. George lives in Illinois, where a law was recently passed to allow transplantation of organs from HIV-positive donors to HIV-positive transplant candidates. However, transplantation of organs from HIV-positive donors remains prohibited by federal regulation. Martinez is advocating for a change in the federal regulation prohibiting transplantation of organs from an HIV-positive donor.

"Living with HIV/AIDS is hard; being co-infected with hepatitis is even harder," says Martinez. He waited for almost two years for his transplant, which was performed at Northwestern Memorial Hospital's Kovler Transplant Center, in Chicago, IL. Before his transplant, he "felt like a I had a time bomb in me waiting to explode." Indeed, Martinez had developed hepatocellular carcinoma by the time he was transplanted on May 14th, 2004. "I was so lucky that an organ became available at the time I needed it, before the hepatic cancer started to spread."

"Transplantation is rigorous and requires lifelong care," says Martinez. "The first four months after the surgery were hard, especially the first two. I was in a lot of pain—in fact, I felt like a truck had hit me when I woke up in intensive care. I was told that it would take from six months to a year before I would feel back to normal. Fortunately, I had wonderful support from my partner, daughter, sisters, other family members and close friends, as well as the medical staff at Kovler. When I wanted to give up, they all encouraged me." In addition to his HIV medications and other drugs, George is taking anti-rejection drugs and monthly injections of HBIG (hepatitis B immune globulin).

Martinez says that he now "feels like a new person. Other transplant recipients have said that their outlook on life is different after the surgery, and it's true: I feel like I'm living with a purpose—to save lives by spreading the message that organs are needed, especially organs from and for HIV-positive people. Although this is not the solution to America's organ shortage, it is a source that we need to tap into. I'm going to do all that I can to help change other state and federal laws." George urges that people ask family members and friends to consider becoming organ donors.

TAGline also spoke with George's hepatologist, Patrick Lynch, MD, about HIV and transplants. "We've had encouraging experiences with liver transplantation in HIV-positive people. We haven't transplanted an organ from an HIV-positive donor into an HIV-positive person yet. Although Illinois has passed legislation to allow this, it is prohibited by Federal regulation. We're working to overturn the Federal regulation. When it becomes possible to transplant organs from HIV-positive donors, we're going to start very conservatively, with organs from people who have never been on HIV treatment, so that we can reduce the risk of transmitting a drug-resistant virus when we transplant an organ. Our first concern is safety."

Lynch says that the field of transplantation in people with HIV has advanced dramatically in the last few years, especially "managing interactions with antiretrovirals and anti-rejection agents, which is crucial. Recurrent HCV can be a serious problem for HIV/HCV coinfected liver transplant recipients." Lynch suspects that cases of severe, recurrent HCV may be due in part to drug-drug interactions that result in higher-than-needed doses of immunosuppressive therapies, "We need to continue learning how to individualize immunosuppressive therapy in people with HIV. We need more data about transplantation in HIV-positive people, which is coming from the NIH study, including an evaluation of MELD scoring and survival in HIV-positive candidates."

"The organ shortage is a crucial problem. We need to keep working to expand the donor pool. I see people dying because they can't get organs. Education helps, but the results are slow: we've seen organ donations increase by about 4% a year, while the demand has increased much more rapidly." Lynch believes that overturning the Federal regulation prohibiting transplantation of organs from HIV-positive donors to HIV-positive transplant candidates is part of an overall strategy needed to increase the donor pool.

Martinez and Lynch are working with Illinois State Representative Larry McKeon, and Robert Murphy, M.D. to bring the HIV/AIDS community and organ sharing organizations together for a forum addressing the medical, political and personal aspects of the Illinois HIV Organ Donation Law.

Changing the system

We must increase educational initiatives on the urgency of the organ shortage in the United States. Conversations about organ donation should become a routine part of health education and medical care, rather than being part of the application process for a driver's license. Currently, in the United States, organs are donated only when a person has previously indicated that they wish to be a donor, or, in near-death situations, with family consent. Switching to a system in which organs are donated unless someone "opts-out" will increase the amount of available organs. In order for an opt-in system to be feasible and acceptable, an individual must be able to change the decision to be an organ donor simply and quickly.


TAG presents a fuller discussion of the research and policy issues concerning liver transplantation in HIV-positive people in Hepatitis C Virus (HCV) and HIV/HCV Coinfection: A Critical Review of Research and Treatment.