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.
Dr. Lynch notes that 30% of people with HIV will have some form of liver disease, usually with infection by either hepatitis B or hepatitis C.
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.
Time -- and Research -- Will Tell
"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
- A transplant is not a cure. With or without HIV, when conditions that led to the need for a transplant continues in a patient, or reappears, the new organ will again suffer.
- People with chronic or serious illnesses are not automatically denied the right to an organ transplant. Nor are people with conditions that make them less likely to succeed with a transplant, such as advanced age.
- HIV is no longer considered at some centers a reason to withhold a transplant.
- You can register for a transplant at more than one center. Each center determines its own eligibility standards. You must go to a center to be evaluated. Being accepted for the waiting list at more than one center does not necessarily mean a shorter wait for an organ -- but it could.
- The effect of immunosuppressive therapy (when medication is given to suppress the immune system to prevent organ rejection) in HIV-positive patients is still unknown.
- In addition, these drugs must be taken for life and the interactions between HIV highly active antiretroviral therapy (or HAART) and transplant medications are not completely understood.
- People with hepatitis C, with or without HIV, do less well with a liver transplant than other groups. Those with HIV who are unable to tolerate antiviral medications following a transplant also do less well.
- African Americans and people with diabetes fare worse with transplants. This is among HIV-negative people -- there's not enough data to discuss people with HIV. African Americans are also harder to match with donor organs because of a greater range of genetic conditions that need to be met.
- Visit www.transplantliving.org for advice on being a transplant patient from the United Network for Organ Sharing (UNOS), the organization responsible for allocating organs nationwide. You can call their Patient Services toll-free at 1-888-894-6361. UNOS has organ-specific information kits available.
What You Can Do
- Urge your friends and family to sign up to be an organ donor (contact UNOS for more information). Even people with hepatitis A, B or C can donate organs (but not people with HIV -- although that may change in the future). According to DHHS, "One organ and tissue donor can help save or enhance the lives of as many as 50 people."
- Some people think they are unable to donate because of advanced age, disease (such as diabetes) or other reasons. This may not be true. People are urged to sign up to become donors and let medical providers determine later whether their organs and tissue are usable or not.
- Stay as healthy as you can. A transplant is rigorous and requires lifelong care. The transplant center needs to see that you are willing to do what you can to maintain your health -- such as taking your HIV medications correctly.
- The National Transplant Assistance Fund provides challenge grants and fundraising ideas for people who are uninsured. Call 1-800-642-8399 or visit www.transplantfund.org. The American Liver Foundation may also be able to help through its Transplant Fund Program. Call 1-800-GO-LIVER (465-4837).
- Before you let fear of rejection over your HIV keep you from seeking a transplant, remember that other groups have been denied transplants. Obese patients were often denied a transplant organ because of their higher surgical risks and poorer outcome. Times change and technology advances. As they say, you are not alone!
Transplant Study Sites
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.
- Beth Israel Deaconess/Harvard (Boston)
- Cedars-Sinai (Los Angeles)
- Columbia University (New York, NY)
- Drexel (Philadelphia)
- Emory University (Atlanta)
- Georgetown University (Washington, D.C.)
- Mount Sinai School of Medicine (New York, NY)
- University of California (San Francisco)
- University of Chicago
- University of Cincinnati
- University of Maryland (Baltimore)
- University of Miami
- University of Minnesota (Minneapolis)
- University of Pennsylvania (Philadelphia)
- University of Pittsburgh
- University of Virginia (Charlottesville)
- Washington Hospital Center (Washington, D.C.)