In 2015, Joe Williams,* a gay man from Mississippi, experienced HIV-related renal failure. As his kidneys shut down, his ankles and feet became swollen and painful. Still, it was the extreme fatigue that really got him down. He’s in his 30s.
Williams promised himself a long time ago never to let HIV run his life, but it became increasingly difficult for him to pursue his dream of becoming an educator. He’d go to classes for his teaching credentials in between dialysis treatments, but it was a constant struggle. And, like many living with HIV, he wasn’t doing well on dialysis.
New Yorker Ken Teasley (right), a gay man from the Bronx, also ended up on dialysis. Teasley was a typical healthy high school student, who “drove a school bus and had a second job, ran long distance track, co-editor of my school newspaper, played cello — you know, normal stuff,” he says, sounding more accomplished than most teens.
Teasley was diagnosed with high blood pressure at 17, but still managed to pass an Army physical two years later. He moved to New York after getting out of the military and did what gay men are supposed to, he says, by getting tested for HIV “every six months until my first relationship.”
Teasley was 27 when he learned he was not only HIV-positive, but “only had 23 percent kidney function and, at some point, would require dialysis.” To prolong the inevitable, he made numerous lifestyle changes to lower his blood pressure and stop taking pain medication for the gout he experienced as a side effect of the kidney failure.
“I finally got off blood pressue meds, but the damage was already done,” Teasley says. In 2002, a doctor recommended he check out The Mount Sinai Hospital’s organ transplant program. It was one of only a handful of medical centers in the U.S. doing transplants into HIV-positive patients. But Teasley wasn’t ready.
“I didn’t want a transplant,” he admits, “until I started dialysis.”
HIV-positive individuals “on dialysis are twice as likely to die as compared to their [HIV-negative] counterparts,” says Dr. Shikha Mehta, medical director of the University of Alabama Birmingham’s HIV Transplant Program. “Research has shown that kidney transplantation reduces this risk of death by 80 percent as compared to staying on dialysis.”
Neither Williams’s nor Teasley’s living relatives were found to be matches, so they were each placed on the organ transplant waiting list. While Teasley was told he might have to wait seven or eight years before getting a donated kidney, Williams’s type O blood would make finding a match even more difficult. He might have to wait up to a decade for a kidney — if he lived that long.
“There continues to be a supply and demand problem where we have more people in need of a kidney than we have kidneys available,” acknowledges Dr. Jayme Locke, surgical director of UAB’s HIV Transplant Program, where Williams’s transplant was performed. That’s why HIV-positive people continue to die waiting for kidneys.
According to HIV.gov, up to 30 percent of those living with HIV suffer from abnormal kidney function issues, which, left untreated, could turn deadly. While the disease itself can cause kidney damage, those on treatment are more at risk of nephrotoxicity, which is “toxicity or injury to the kidneys.” It can be a side effect of some HIV meds, including protease inhibitors and nucleoside reverse transcriptase inhibitors. Long-term survivors are particularly susceptible to this kind of kidney damage because of the length of time they’ve been on antiretroviral meds.
In addition, a number of comorbidities common in those living with HIV also increase the risks of kidney damage, including high blood pressure (which HIV-positive people are three times more likely to develop), diabetes (which poz folks are four times more likely to develop), and hepatitis C (which approximately one out of every four people with HIV also have). Poz people suffering from these other diseases further add to the number who experience renal failure, have issues on dialysis, and spend their remaining years on a transplant waiting list.
Mary Smith* was already aware she might need a transplant at some point when she discovered she had gotten HIV from her husband. “When I became HIV-positive, I was, ‘Oh god, what about if I need a transplant?’ I’m going back to 1990,” Smith recalls. “That always scared me, that I would never be able to get a transplant, because, at the time, no one even thought about it.” Indeed, since the height of the AIDS epidemic in the 1980s, HIV-positive individuals have been legally prohibited from donating organs, and doctors have been prohibited from transplanting HIV-positive organs into another person — regardless of the recipient’s status.
Because of the way HIV can attack the immune system, people living with the virus were once considered too high risk to even receive organ transplants. But in the 1990s, the federal government granted a few research facilities the opportunity to study the impact of organ transplants on people living with HIV. Dr. Sander Florman, director of Mount Sinai’s Recanati/Miller Transplantation Institute, says his hospital was one of the first “committed to the transplantation of people with HIV since way before it was ever anywhere near popular. I think the first HIV-positive transplant was done in 1998 here. And that was at a different time when people were very scared of HIV.”
Florman explains further: “Mount Sinai found many of our anti-rejection medicines actually work synergistically with the HIV medicines to prevent the virus. And that’s part of the secret to why people with HIV can have successful organ transplants, which was heresy 10 years ago.”