David Aldridge of Los Angeles had a kidney transplant in 2006, but he will soon need another. Like many people living with H.I.V., he suffers from kidney damage, either from the virus or from the life-saving medications that keep it at bay.
Until recently, such patients did not receive transplants at all because doctors worried that their health was too compromised. Now they can get transplants, but organ-donor waiting lists are long. And for Mr. Aldridge, 45, and other H.I.V. patients, a potential source of kidneys and livers is off limits, because it is illegal to transplant organs from donors who test positive for the virus — even to others who test positive.
But federal health officials and other experts are calling for repeal of the provision that bans such transplants, a 23-year-old amendment to the National Organ Transplant Act.
“The clock is ticking more quickly for those who are H.I.V.-positive,” said Dr. Dorry Segev, transplant surgery director of clinical research at Johns Hopkins and a co-author of a newstudy indicating that 500 to 600 H.I.V.-infected livers and kidneys would become available each year if the law were changed. “We have a huge organ shortage. Every H.I.V.-infected one we use is a new organ that takes one more person off the list.”
The ban on transplanting organs from people with the virus that causes AIDS was passed at the height of the AIDS scare in 1988, when infection with the virus was considered a death sentence. But now many people with H.I.V. are living long enough to suffer kidney and liver problems, adding to the demand for organs.
This has led some health authorities to say that H.I.V.-infected organs should be available for transplant, primarily for patients infected with the virus but also potentially for some who are not.
The federal Centers for Disease Control and Prevention and other health agencies are about to issue new guidelines that will encourage a first step: research involving transplanting H.I.V.-positive organs into H.I.V.-positive people. That would require the transplant ban to be lifted.
“We would like to see as many safe transplants occurring as possible, and there’s no reason why H.I.V.-positive recipients shouldn’t get transplants and that H.I.V.-positive donors can’t be used,” said Dr. Matthew Kuehnert, who directs the C.D.C.’s Office of Blood, Organ and Other Tissue Safety.
“I could see someone saying: ‘That’s horrible. Why would you want to transplant H.I.V.?’ ”he said. “They don’t understand. Anyone who understands transplant today, in the current era, understands the need.”
The H.I.V. Medicine Association, a professional group, just issued a similar statement, calling for “changing federal law on H.I.V.-infected organ donation.” Its chairwoman, Dr. Kathleen Squires, said her organization and other medical groups would lobby Congress this year.
Until recent years, H.I.V.-positive patients were not given transplants because of concerns that the virus could destabilize transplanted organs or that the immunosuppressive drugs used in transplants might make the virus more dangerous.
But a large clinical trial found that results in H.I.V.-positive recipients are “just as good as H.I.V.-negative patients, more or less,” said the study’s leader, Dr. Peter Stock, a transplant surgeon at University of California, San Francisco. “Our kidney patients do slightly worse than the general population of transplant patients, but better than kidney transplant patients over 65.”
Last year, at least 179 H.I.V-positive people received kidneys or livers, up from 9 in 2000.
Allowing H.I.V.-positive organs to be used would create an additional supply when some 110,000 Americans are awaiting transplants. They often wait years, and sometimes are too sick when organs become available to benefit from them.
There are concerns, even among some supporters of changing the law.
“People I know in the gay community are very split on it,” said Michael Bauer, 45, of Iowa City, who became H.I.V.-positive two years ago and will probably need a liver transplant in coming years. “There’s the concept that having an H.I.V-positive donor could actually be more damaging. You could have a donor who has a tougher strain of H.I.V.”
Doctors say this and other risks could probably be managed by screening out the sickest donors and recipients. And for patients like Mr. Bauer, the risks may be worth it.
“I can get slapped on a list for a healthy liver, but there’s a whole slew of people ahead of me,” he said. “I don’t want to be excluded from options.”
Others fear that H.I.V.-infected organs could be transplanted by mistake. While extremely rare, such errors have occurred.
In Chicago in 2007, four recipients were infected by organs from a single dead donor; the body had tested negative, but the test was administered too early, before the virus could be detected. In 2009 a kidney recipient in New York was infected from a living donor, who tested negative, then had unprotected sex and became infected in the 79 days before the transplant. That case prompted the federal disease centers to issue stricter testing recommendations this year, and Dr. Kuehnert said the new guidelines would address ways to make transplants even safer.
Not all the consequences of transplants involving H.I.V. patients are understood yet. Dr. Stock’s patients, for example, were two to three times as likely as other recipients to begin rejecting their healthy donated kidneys. More immunosuppressive drugs helped them adjust, he said, but the donated kidneys may wear out sooner, necessitating additional transplants.
The only known transplants involving H.I.V-positive donors and recipients, conducted in South Africa, have so far been successful.
There, with H.I.V. widespread, Dr. Elmi Muller, a Cape Town surgeon, performed four transplants in 2008 — “instead of wasting these kidneys, throwing them literally in the bin,” she said. After word got around, she said, some people questioned “whether it was the right thing to do.”
Dr. Muller stopped while ethics committees reviewed the question, and she ultimately obtained approval. Of 10 patients she has transplanted, only one has experienced rejection problems. About 50 are on a waiting list.
In the United States, patients with hepatitis C, a disease many H.I.V-positive patients also have, are now living with organs from donors with hepatitis C.
In 2004, Illinois passed a law allowing transplant of H.I.V-positive organs, and “our hope was maybe other states will pick this up,” said Dr. Michael Abecassis of Northwestern Memorial Hospital in Chicago. But federal transplant law supersedes the state one.
If such transplants are allowed, they will most likely start with clinical trials, and most organs will come from deceased donors; living donors are at risk for liver and kidney problems themselves. Most recipients would probably be H.I.V-positive because “we don’t really know what would happen to someone with non-H.I.V. status,” Dr. Abecassis said.
But some experts, including Dr. Segev and Dr. Kuehnert, say they can foresee such transplants even for H.I.V.-negative patients because contracting H.I.V. would be preferable to kidney or liver failure.
“I don’t want to minimize living with H.I.V, but it is a medically treatable disease now,” said Charlie Alexander, president of the United Network for Organ Sharing, which manages the country’s organ transplant system. “In certain cases, I think it would be medically appropriate.”
Mr. Aldridge, the Los Angeles patient, who has been H.I.V.-positive for 25 years, says he would certainly consider an infected kidney.
“There’s a stigma about transplanting us to begin with, with some people saying why should an organ be quote unquote wasted on us,” he said. “So if we can help each other it would make things much better for us. If I need a kidney transplant to survive, then so be it.”