"If this legal ban were lifted, we could potentially provide… (Barbara Haddock Taylor,…)
The nation has a huge need for kidneys, livers and other organs for transplant, but federal law has one absolute rule for donors: no HIV infections.
Some Johns Hopkins doctors now argue that HIV should not disqualify the organs from transplant into recipients who also are already infected with the virus.
"If this legal ban were lifted, we could potentially provide organ transplants to every single HIV-infected transplant candidate on the waiting list," says Dr. Dorry L. Segev, an associate professor of surgery at the Johns Hopkins University School of Medicine whose recent study concluded that there are 500 potential donors disqualified every year.
The ban was included in the National Organ Transplant Act of 1984, a time when the AIDS epidemic was new and the disease unknown, Segev said.
But now that HIV has become a chronic treatable disease rather than a death sentence, there appears to be growing consensus in the medical field that infected organs should be considered. Even some practitioners who have expressed concerns that HIV patients could become sicker are still calling for studies, and at least one set of Illinois doctors has pursued a change.
Segev and others say that lifting the ban wouldn't just benefit those with HIV, but everyone waiting for a transplant. More than 100,000 people are in need of organs, and up to 20 people a day die waiting for them, according to the United Network for Organ Sharing, the nonprofit that manages the nation's organ transplant system for the federal government.
Further, HIV-positive patients have for about a decade been successfully receiving healthy organs – about 130 kidneys and 40 livers in 2010. Doctors say that new livers are often needed by HIV-infected patients who also have hepatitis, and kidneys are needed by those who also have hypertension and diabetes or have complications from HIV or the antiretroviral drugs that control the virus.
A large study of HIV patients who receive uninfected organs is ongoing but doctors say early data show success similar to transplants in non-HIV infected patients.
Segev and other researchers found the 500 potential new donors blocked by the ban through data included in two national registries. The Nationwide Inpatient Study found an average of 534 each year between 2005 and 2008 and the HIV Research Network found and average of 494 each year between 2000 and 2008. Segev's findings were published online March 28 in the American Journal of Transplantation.
Many other doctors, bioethicists and lawmakers agree that the ban should be lifted. Illinois passed a law reversing a state ban in 2004, only to discover that it was not enforceable because of the federal ban.
To be sure, some practitioners have questions about using infected organs. They want to know if the organs would be healthy enough, if patients with well-controlled HIV would be infected with new, potentially aggressive strains of the virus and if there are safeguards for those without HIV.
Advising a slow approach is the HIV Medicine Association, which represents doctors and other health care professionals who focus on HIV. The group supports clinical trials to collect data before there is widespread use of infected organs.
Dr. Kathleen Squires, chairwoman of the group, said the ban should be lifted so the organs can be used in such trials.
The only information practitioners have now comes from South Africa, where a few transplants have been performed recently. But data have only been reported on four patients who had surgery in 2008 according to a report in the New England Journal of Medicine just two years later.
She said she believes there is broad support for more research, especially among those who work in the HIV field and see how medicine has turned the disease into a chronic condition. Those with HIV now have normal life spans, she said.
"The whole concept needs to be studied to see if the transplants can be done safely and effectively," said Squires, also director of the Division of Infectious Diseases at Thomas Jefferson University Hospital in Philadelphia. "I'm sure some people would ask why anyone would even think of doing that, but there is a clear reason, there's a shortage."
But others disagree that trials are necessary, including Dr. Gregory W. Rutecki, a bioethicist and kidney disease specialist at the University of South Alabama Medical School. He said patients who are facing death should be given the choice now.
He said those with hepatitis have a choice. Transplants from those with hepatitis to others with that disease have been done successfully for years, and he said similar steps and precautions could be taken with HIV donors and patients.