Gone are the days when transplant centers refused patients with HIV. Today, it's common knowledge that with the powerful HIV medicine available, people living with the virus can expect a much longer and healthier life, making the arduous job of a transplant more feasible.
"Most transplant centers are not looking at HIV as a contraindication [two things that don't go together], but as a challenge," says Dr. Patrick Lynch, a hepatologist at Northwestern Memorial Hospital in Chicago. "Although not everyone with HIV will meet all the criteria for a transplant, it's good to know that it's available."
It's especially good news as conditions like liver disease and viral hepatitis become a greater risk for death in people with HIV. Moreover, not only do non-HIV related conditions become a greater risk as treatment successfully wards off the complications of AIDS, but the treatment itself may contribute to disease. The medications might, for example, lead to stress on the liver.
According to the National Organ Transplant Act (NOTA), people with HIV who are asymptomatic (without symptoms of disease) "should not necessarily be excluded from candidacy for organ transplantation." NOTA goes on to state that these persons "should be advised that he or she may be at increased risk of morbidity and mortality because of immunosuppressive therapy [required for all transplant patients]." It also says that, "Administering treatment to patients who test positive for the HIV antibody should not be optional or discretionary for health care personnel." In other words, NOTA advocates a non-discriminatory policy.
Once a person receives a diagnosis of end-stage disease, he or she can request an evaluation at a transplant center. There are 200 around the country, and each has its own criteria.
The Kovlar Transplant Center at Northwestern is currently evaluating and putting people with HIV on the liver transplant list. The center plans to do more liver and kidney transplants in the future. They are also conducting a study to evaluate the interactions between HIV medications and drugs used to prevent organ rejection after a transplant. (As this will require post-transplant blood work, HIV-positive patients with transplants from other Chicago area centers can join this study.)
"We have the transplant expertise and the HIV expertise. We have Rob Murphy and other infectious disease doctors who've conducted groundbreaking ACTG [AIDS Clinical Trials Group] studies. We're excited about combining the two fields of expertise," says Dr. Lynch. "Additionally, we are looking into new ways to expand the number of organs available for transplant. We were the first center in Chicago to do living donor liver transplants as well as the first center to do a liver transplant in someone infected with HIV. We are also involved in changing the state law to increase the number of organs available for liver transplantation."
Dr. Lynch advises that you select "a center with experience in HIV because both conditions need to be treated well afterwards." He further suggests that you look for the centers interested in HIV-positive transplants and that you ask for referrals to other centers if you're rejected.
He also points out that a center closer to home is important, because post-operative care might require daily visits for a time, and because being far from home puts an extra burden on family members and other support people.
"Experimental" procedures leave the realm of the experimental after a significant amount of work takes place -- with the help of solid research.
It's in this area that HIV-specialists from the University of California at San Francisco (UCSF) are leading the way. Doctors at UCSF successfully struggled to establish a large, multi-center study on transplants in HIV-positive people. This trial opens 17 centers around the country to people with HIV (see box, below). As with the trial at Northwestern and at other centers, this research seeks to determine the best way to make transplants successful for people with HIV.
This does not mean that people with HIV will be able to receive an organ any faster than anyone else. What is does mean is that is that this rigorously designed trial will look at the transplants from A to Z, collecting the information needed to make transplants work best for people with HIV. If it turns out that these transplants are safe and effective, such data should also help put to rest battles for reimbursement from Medicare and private insurance. Also, without a study, transplants can be done in HIV-positive people, but the knowledge gained is either lost or reported after the fact such as with a case report or a chart review -- not the best way to advance scientific information.
Study co-chair Dr. Michelle Roland, an assistant professor of medicine at UCSF at the Positive Health Program at San Francisco General Hospital, points out that there are other studies being conducted as well, and that people with HIV should investigate all of their options. She notes, however, that some of the centers in this study have the most experience in this work. "This is a new area and there are a lot of things to learn. It could be that a center doing this for the first time can do it perfectly. Most people, however, can expect to do better with a center that has a high volume vs. one with a low volume of any particular procedure, such as a by pass."
Dr. Roland and her colleagues have published several papers and presented reports on their work. In their papers, the researchers note that transplants may be a good option for HIV-positive people who are "relatively healthy." This is an important distinction. "End-stage liver disease is different from end-stage HIV disease in the context of transplants. We don't include people with advanced HIV disease in our study," she explains. Dr. Roland stressed that people with HIV "do everything they can to prevent a transplant."
A few suggestions: get screened for hepatitis B and C, get vaccinated for hepatitis A and B, and have your doctor monitor your liver enzymes and other blood work on a regular basis. Says Dr. Roland, "Transplantation is a very serious endeavor. While it's very exciting that this option is available, you would rather not have to exercise this option and take all these meds with all these toxicities for life."
If you do need a transplant, she advises that you get evaluated for one early after you receive that diagnosis, not wait until you're very sick.
What You Need to Know
What You Can Do
The following sites are part of the multi-center study. For contact information at these centers, call study data coordinator Craig Lazar at 1-301-251-1161, or e-mail him at firstname.lastname@example.org. Visit www.emmes.com.