Johns Hopkins Medicine has performed the nation's first liver and kidney transplants from a donor infected with HIV to recipients also infected with the virus, a triumph for one of the transplant surgeons, who fought for six years for federal approval of the life-saving surgery.
Six years is longer than most patients spend on the transplant waiting list — and that was unacceptable to Dorry L. Segev. He watched in frustration as one HIV-infected patient after another died waiting for organs while available HIV-infected organs were being discarded because HIV-to-HIV transplants were prohibited.
"It wasn't a medical issue," Segev, an associate professor of surgery and epidemiology at Hopkins School of Medicine, said. "It was entirely legal."
HIV was the only condition absolutely banned in the National Organ Transplant Act passed in 1984, when the AIDS epidemic was new and the virus was almost invariably fatal, not the treatable chronic disease it is now.
But times and medicine changed, giving Segev the opening to champion an effort to overturn the ban. He and his colleagues made repeated trips to Capitol Hill to meet with any legislative assistant who would give them time and help them navigate the bureaucracy of Congress to persuade lawmakers that a change in policy was warranted.
He conducted research, published in the American Journal of Transplantation in 2011, that 500 to 600 HIV-infected donors annually would be eligible to donate kidneys, livers and other organs if the prohibition were lifted, saving about 1,000 lives each year.
Allowing the transplants also would shorten the waiting list for noninfected patients.
"The hardest thing was to get it on their radar," Segev said Wednesday, after a news conference announcing the transplants.
The bipartisan HIV Organ Policy Equity — or HOPE — Act was introduced in early 2013. Its sponsors included Rep. Andy Harris of Baltimore County, a Hopkins anesthesiologist, who was the first Republican to support the measure.
The legislation was approved by Congress and signed by President Barack Obama that year.
In February, Hopkins became the first U.S. hospital to gain approval for the transplants from the United Network for Organ Sharing, the nonprofit that manages the nation's organ transplant system for the federal government.
The surgeries — one donor provided a liver to one recipient and a kidney to another — were performed this month.
Segev said the effort was a thrill, not because he and others were able to use science, and a heaping amount of determination, to change law and policy, but because the old law undermined their ability to save lives.
"We were watching patients die, and we were watching organs being wasted," he said.
Some doctors initially were concerned that infected organs weren't healthy enough, or that they might harm patients by introducing more aggressive strains of HIV.
Dr. Christine Durand, an infectious disease specialist who is an assistant professor of medicine at Hopkins, said that most donors have viral loads that are sufficiently suppressed with medication. Protocols developed at Hopkins call for donors and recipients to be on similar drug regimens.
The consensus had been growing that HIV-to-HIV transplants would be safe and effective and could save many lives by helping sick patients get transplants faster. Those with HIV who were willing would form their own line to accept organs from an HIV-infected donor, and the list for everyone else would get shorter.
Illinois passed unenforceable legislation in 2004 to overturn the ban ahead of U.S. lawmakers.
More than 120,000 people are on the waiting list for organs now, about 80 percent of them for kidneys, according to the organ sharing network.
Segev said many hospitals have been following Hopkins' lead and performing transplants from HIV-negative donors to HIV-positive patients to gear up for the HIV-to-HIV transplants.
The need for organs can often be more urgent for those with HIV, he said. Often HIV patients also have hepatitis, which wrecks their livers. Kidneys are needed by those who also have hypertension and diabetes or complications from HIV or the antiretroviral drugs that control the virus.
Morris Murray was an HIV-positive patients who not only had hepatitis, but later developed cancer.
He needed two new livers — his body rejected the first one — and encouraged others during the Hopkins news conference to become donors, especially those with HIV.
"We need to take full advantage of this," Murray said.
The family of the first HIV-positive kidney and liver donor said she wanted to help. The New England woman, whose name was not released, was a "daughter, mother, auntie, best friend and sister," according to a statement from her family provided by the New England Organ Bank.
"From early childhood she always stuck up for the underdog," said the statement. "HIV was not a choice she made, but she fought it for herself and our family every day. As we all know, HIV is a stigma and people with the disease are unfortunately at times treated differently. ... She was able to leave this world helping those underdogs she fought so hard for."
Both recipients, who wanted to remain anonymous, were doing well, Hopkins said. One has left the hospital and the other is expected to be discharged shortly.
News of the transplants was welcomed by others who worked on overturning the ban. The HIV Medicine Association, which represents doctors and researchers in the HIV field, said the change in the law and the first transplants were rewarding.
"For patients living with HIV, deceased donors with the same infection represent a unique source of organs holding the potential to save the lives of hundreds of HIV-infected patients struggling with liver and kidney failure each year," the group said in a statement. "We look forward to seeing this medical breakthrough offer hope to more people living with HIV infection who are in need of organ transplants."
Hayley Gorenberg, deputy legal director for Lambda Legal, a civil rights organization that serves the lesbian, gay, bisexual, and transgender communities and people with HIV, called the transplants a "triumph of science over stigma."
Lambda Legal had for years represented HIV-positive patients whose insurers had denied coverage for transplants from HIV-negative donors. Once such coverage was more common, Gorenberg said, the group turned its attention to HIV-to-HIV organ transplants.
"The change in law and policy to catch up with what medicine can do for people, it's a huge step forward," she said. "The lives and the quality of life of hundreds will be affected every year."
Segev said he has more HIV-positive patients waiting for donors, and expects they will now get needed organs sooner. He said his next move would be sharing Hopkins' protocols for choosing donors and recipients and ensuring safety with doctors at 30 other transplant hospitals.