Activists say that if health policies were modernized, people like Lamont Valentin, who died earlier this month, could have longer lives.Photo courtesy of ACT UP New York
Lamont Valentin needed an oxygen tank to breathe. Everything he did — whether it was traveling by bus from his home in Harlem to his doctor's office, teaching HIV-positive kids photography at a New York City nonprofit or taking care of his 2-year-old son — the tank accompanied him.
About a year and a half ago, it became clear a lung transplant was Valentin's only hope to breathe easier. And he could have been a good candidate for the procedure — he was young and otherwise healthy. He, his friends and some medical experts believed he would have been able to survive for many more years if he had been given new lungs.
But when he began looking for a transplant, he was denied almost everywhere he turned, supporters said.
Holding him back was the virus he was born with in 1984, HIV. Early in life, before he began using modern antiretroviral drugs, it left him with permanent lung damage.
Despite years of living with HIV, Valentin had virtually undetectable levels of antibodies of the disease in his blood throughout his 29 years.
But his lungs became progressively more inflamed and infected until about two years ago, when he became reliant on the oxygen tank. As his condition deteriorated, so did his outlook on the chances of getting the procedure that would save his life.
"Over the past month I watched his morale begin to decline," his friend Adam Melaney said. "He called me and said, 'I don't understand why no one wants to take care of me.'"
On Dec. 3, while riding a New York City bus back home from a doctor's appointment, Valentin died.
Now activists are hoping to use his story as a way to spark a conversation about the patchwork of policies that influence medical decisions surrounding the medical treatment of HIV-positive people.
The activists say they hope to highlight that while new and better medicine has made procedures like lung transplants — once deemed too risky for people infected with HIV — feasible, the policies that guide doctors' decisions have not caught up.
As more and more HIV-infected people have longer lives, and therefore require more non-HIV-related care, the activists and some experts say adapting medical practice to the new reality is imperative. They say that if the policies were modernized, people like Valentin could live longer.
The circumstances leading up to his death are complex, and most of his friends and supporters don't place blame on any particular doctor.
But they say several prominent hospitals failed to live up to their high standards of care by ruling out a lung transplant for Valentin because of his HIV status. They say that at the very least, hospitals like New York–Presbyterian/Columbia University Medical Center, where Valentin received much of his care, had the responsibility to see if he would have made a good candidate for pulmonary transplantation.
On Wednesday, Valentin's friends will join protesters from the AIDS activism group ACT UP at Rockefeller Center to express their dismay at his treatment, and to remember his life.
His friends say that when he died, he took with him a legacy of inspiration for people born with HIV.
Valentin was born to a drug-addicted mother with HIV. His mother died when he was 6, kicking off his years-long journey through the foster care system, homelessness and an eventual rebound through Camp AmeriKids, an organization that provides services to children with HIV.
Valentin attended summer camp and year-round programs there until he aged out, at which point he became a leader at the camp, helping kids deal with the emotional toll of living with HIV.
"He was always this shining example for other people and how to choose what's best in life," Melaney said. "He could have gone on disability, had his rent paid for and not work. But he didn't do that."
Eventually, though, Valentin was forced to stop working because of his deteriorating lungs.
He had to stay home, being cared for by his wife, Lah-Nah, whom he married last summer.
As his lungs got worse, the bureaucracy surrounding his care became bigger.
He and his friend Jose Gonzalez would spend hours at a time on the computer looking at studies about lung transplants, paying special attention to studies — of which there are only a few — on HIV-positive people.
Gonzalez and others say no doctor in New York City was willing to consider the surgery.
"He loved his son and Lah-Nah," Gonzalez said. "He got to experience some of the love he didn't have in his life (previously). He became determined to keep experiencing that."
So Valentin and his family began exploring options outside the city. Doctors at the University of California San Francisco Medical Center and Massachusetts General Hospital in Boston said they'd be willing to put him through tests to see if he was a good candidate for transplant.
But it gradually became clear that neither California nor Massachusetts was a practical option. In order for Valentin to be tested, he and his family would need to move close to one of the hospitals, integrate his continuing care within a new hospital system and persuade his insurance company to accept the switch of providers. He had neither the money nor the good health to make the switch.
"There were just too many insurmountable factors," Melaney said. "That's when he started to get scared."
Valentin and his family got their hopes up when President Barack Obama signed the HOPE Act in late November. The act legalized organ donation from HIV-positive people to other HIV-positive people for the first time. But, as with any law, its effects will take years to be fully felt.
In the meantime, Valentin hoped that the intervention of groups like ACT UP would help persuade hospitals in New York to seriously consider giving him new lungs.
The group targeted New York–Presbyterian, one of the only lung transplant hospitals in the city. Protesters said that because the hospital was providing other care to Valentin, and because its doctors had performed risky transplants in the past, it had a responsibility to give him a shot.
New York–Presbyterian could not be reached for comment in time for publication of this story.
While some experts say Valentin would have been a good candidate for a transplant, lung transplants are rare, and those in HIV-positive people are even rarer.
There's no law barring people with HIV from receiving transplants, no requirement that doctors report when they determine a transplantation contraindicative because of HIV, and therefore no way to know how common situations like Valentin's are.
But experts say that as people with HIV live longer, it's likely that the need for lung and other organ transplantation will rise dramatically. Valentin's story provides an example of what may happen more frequently if policies are not clarified.
"Because there's no blanket regulation, it's very hard to know what the numbers are," said Tim Horn, the HIV project director for Treatment Action Group, which advocates for research and improved treatment for patients with various illnesses. "But I think Lamont's story is just the tip of the iceberg."
Studies on less risky organ transplants (such as livers) in HIV patients have shown generally positive outcomes. The few case studies on HIV-positive people given new lungs have also shown promising results.
That has led to a debate within the medical community about whether HIV should ever be a reason to deny someone surgery. Activists at ACT UP clearly believe the answer is no. And it seems some doctors are beginning to agree.
"There are risks associated with transplanting for anybody," said Peter Ubel, a physician, author of books about medical decisions, and professor at Duke University. "If everything else looked great (with Valentin), and the only downside was that he was HIV-positive, I don't see how you could justify that."