New rules on organ donation extend life of people living with HIV, and decrease wait times on organ donation lists for everybody
In the U.S., it is now legal for people living with HIV to be organ donors to HIV-positive recipients. Clinicians are trailblazing new programs to make kidneys, livers and other vital organs available to people who need them, and advocates are spreading the word to people living with HIV that they can now sign up to be an organ donor.
“This change is increasing the availability of organs, and decreasing the amount of time that people wait for them,” said Michael Hampton, an HIV-positive organ recipient and volunteer ambassador for Donor Network West, an nonprofit organ procurement organization. “There’s now more likelihood that people [in need of a transplanted organ] will be matched.”
A 1988 law made it illegal for organs from people living with HIV to be used in transplants or research. In more recent years, activists and medical professionals advocated for a change in the law that would bring it more in line with medical advances and a better understanding of HIV.
Advocates criticized the law passed in 1988 on the grounds that potentially usable organs were being discarded, while people needing new organs waited on transplant lists for years at a time. Hampton waited on transplant list for about two and a half years, but said that his wait time was “actually very short.” “Normally, people wait between two to five years, minimum, to get a match—and they just get sicker along the way,” he said.
One estimate, by Dorry Sergev, MD, PhD, professor of surgery at Johns Hopkins Medicine, found that organs donated by 500 to 600 people living with HIV in a year could save the lives of more than 1,000 people.
In 2013, the Federal Government passed the HIV Organ Policy Equity (HOPE) Act, which overturned the outdated ban. Two years later, the U.S. Department of Health and Human Services published guidelines for safe transplantation. In March 2016, the first liver and kidney transplants between HIV-positive donors and recipients were conducted at Johns Hopkins Hospital.
Hampton, a long-time San Francisco resident who has been living with HIV since about 1986, was able to receive a liver transplant at the University of California, San Francisco. By the time he received the transplant, he had been living with liver cancer for about seven years. Since the transplant, he’s been cancer-free for almost five years.
“When people get transplants, they’re happy to be alive. At the same time, we grieve the loss of life, that allowed us to live longer,” he said.
Although Hampton received a liver from an HIV-negative donor, he was elated when the HOPE Act passed. “I want us [the HIV-positive community] to have an equal opportunity to get a transplant if we need one. The way we can do that is by increasing the numbers in the registry. Everybody should know about the HOPE Act,” he said.
To spread the word about organ donation among people living with HIV and the larger community, Hampton volunteers some of his time for Donor Network West. As an ambassador for the nonprofit, he educates people about the value of signing up to be an organ donor, and encourages people to consider it as a way to extend someone else’s life after they die.
“We definitely want to encourage everybody, regardless of what their health conditions are, to consider being an organ donor,” said Kristina Ruiz-Healy, community development liaison at Donor Network West. “It’s common for people with health conditions to think that they are not qualified, but we encourage people not to rule themselves out based on their age or health condition.”
To register as an organ donor, and for more information about organ donation, visit Donor Network West.