University of Cape Town surgeon Dr. Elmi Muller led a team that transplanted 10 infected organs successfully into HIV-positive patients. (Photo Courtesy of Groote Schuur Hospital)
A fight is brewing in this country, although you may be unaware of it.
This battle is not between Google and Bing, or Republicans and Democrats. It’s a fight between advocates and lawmakers, and it’s over the use of HIV-infected organs.
The Centers for Disease Control and Prevention has issued new guidelines to encourage research into transplanting HIV-positive organs into HIV-positive people. But, for the research to happen, Congress would have to lift a ban on transplanting HIV-infected organs.
Additionally, the HIV Medicine Association, a professional group of physicians who treat HIV-infected people, recently announced plans to lobby national lawmakers on the issue this year.
The ban on transplanting HIV-infected organs infected applies even to patients who already carry the virus. The ban is a result of a 23-year-old amendment to the National Organ Transplant Act, passed when the HIV/AIDS crisis was still in its infancy.
Supporters of the ban say it prevents infected organs from making sick patients worse and increasing the cost of their treatment. But HIV/AIDS activists in the medical community say it is better to transplant the organs and extend lives rather than dispose of them.
One such activist, Dr. Elmi Muller, said that when she began performing surgery on AIDS patients in South Africa, which has more AIDS cases than any other nation, she was shocked by what she saw.
“We would just throw [HIV-positive organs] away; we wouldn’t use them,” Muller said in a phone interview Wednesday from South Africa. “So it became clear to me that the way forward is to utilize these organs for the recipients who are dying.”
Muller and her team have since performed 10 HIV-positive kidney transplants to HIV-positive recipients, garnering international attention. Of 10 patients, only one experienced rejection.
Still, even activists are on both sides of the issue. Some argue that the amendment is outdated, written when an HIV diagnosis was tantamount to a death sentence.
“It started in the 1980s, when the disease was termed GRID (Gay Related Immune Deficiency),” wrote Huffington Post blogger Kat Griffith, who is HIV-positive.
“President (Ronald) Reagan refused to even say the word AIDS for four years and the epidemic decimated entire communities in this country all the while.”
In the 1980s, people with an HIV diagnosis were not expected to live long enough for the virus to affect their organs, necessitating transplants. Today, the average life expectancy for a person who receives an HIV diagnosis at age 20 is roughly 32 years. Medical advances and research have changed the landscape of HIV treatment, and perhaps it only makes sense that the laws evolve to match, advocates say.
There is a precedent for transplanting infected organs. It’s legal to transplant organs infected with hepatitis C into patients with hepatitis C, bolstering the argument that it’s not the severity of the disease that’s sustaining the ban — it’s the stigma.
But activists on the other side of the issue, who include award-winning playwright Larry Kramer, are opposed to substandard organs.
Kramer, an early HIV/AIDS activist, has firsthand experience with this issue. He’s been HIV-positive since 1988.
“I’ve almost died three times,” Kramer said in a phone interview. “The second time was when I was given six months to live because my liver was giving out, and I didn’t think that I could get a new liver when I had HIV.”
After major news organizations reported him dying (The Associated Press even reported he had died), Kramer got a new liver. But he does not lend his support to transplanting infected organs.
“Substandard organs into sick people only makes for people who will continue to be sick,” Kramer said. “I’ve seen people who have received bad organs, and how sick they can get.”
Kramer’s story is a good example of the fact that once organ failure is on the table, most patients with HIV/AIDS don’t have much time.
“The clock is ticking more quickly for those who are HIV-positive,” Dr. Dorry Segev told The New York Times, which reported on the issue two months ago. He is transplant-surgery director of clinical research at Johns Hopkins Hospital in Baltimore.
Segev also co-authored a study asserting that if the law changed, 500 to 600 HIV-infected livers and kidneys would become available each year. The surgeries would reduce 110,000 patient lists for transplants.
There are strong dissenting voices. The case against allowing HIV-infected organs to be transplanted includes the compelling argument that the organs could be transplanted into noninfected patients by mistake.
There are examples of such medical errors. In Chicago in 2007, a donor had tested negative for HIV, but the test was administered too early – during the three- to six-month period when HIV antibodies aren’t detectable in the blood. As a result, tainted organs infected four transplant recipients.
Another case that caught national attention involved a kidney recipient from a living donor who initially tested negative, but then had unprotected sex and contracted HIV in the 79 days before the surgery.
Another concern is that organs would be somewhat “wasted” on HIV patients, since they are already immune-compromised.
“There’s this kind of stigma in South Africa,” Muller said. “My medical colleagues did not feel comfortable giving HIV-positive patients the organs, and so they were offered nothing. The patients aren’t considered good transplant candidates.”
David Aldridge, 45, who is awaiting a new kidney, said the stigma exists, as he told The New York Times.
“[There are] people saying, why should an organ be wasted on us?” Aldridge said.
Surprisingly, though, large clinical trials found that transplant organs given to patients with HIV had outcomes comparable to organs given to patients without the virus. But it is true that transplant organs given to HIV-positive patients wear out faster.
Another argument against lifting the ban is that doing so might spur a movement for HIV-negative patients to receive infected organs. One group that may support such a movement is the United Network for Organ Sharing. The president, Dr. Charlie Alexander, told the Times, “I don’t want to minimize living with HIV, but I think it’s a medically treatable disease now.”
Alexander, like many doctors, said he believes that there should be a special exception, that HIV-negative people who are entering organ failure should have the choice of accepting an HIV-infected organ – better HIV-positive and alive, than dead.
The transplant of HIV-infected organs is a polarizing issue within many medical groups, political circles and communities.
But people affected by the issue, such as Aldridge, who has been HIV-positive for 25 years, understand the risks perhaps better than anyone else. He says that if there were a transplant list for infected organs, he would be on it.
“If I need a kidney transplant to survive,” Aldridge said in a news report, “then so be it.”