Last December, Lamont Valentin died on a New York City bus, because doctors refused to give him a lung transplant. They didn’t refuse because he was too old (he was 29), or because he smoked (he never touched a cigarette), or because he was unmotivated (he had a wife and a two year old son). And they didn’t refuse because they doubted he could juggle the complex drug regimen (he had decades of experience under his belt). They refused because he had HIV.
Lamont Valentin may have expected to die one day from AIDS, but he never could have expected to die simply because he had HIV. But that’s exactly what happened. Born with the disease in 1984, he struggled in the era before antiretroviral medications could stand between opportunistic infections and his young lungs. The damage couldn’t be undone. Lamont ended up with chronic obstructive pulmonary disease, which causes carbon dioxide to pool in the body. Blood vessels in the lungs tighten up to fire out oxygen-rich blood. This can’t go on forever. The heart is overworked, and when it is strained it enlarges and weakens, and becomes doomed for failure. Lamont needed a lung transplant, but various centers in New York City refused to list him because of his HIV status.
“He had such a sense of right and wrong,” remembers Gaby Moss, executive director of Camp AmeriKids, where Lamont had been both a camper and a counselor for youth living with HIV and sickle cell disease. “He had such faith in the world. If you do the right thing and follow the right steps, the world will give you what you deserve.”
He spent nearly every waking second of his final months trying to get the lung transplant that he deserved. It looked like his work might just pay off. At least two treatment centers were willing to evaluate him, UCSF and Massachusetts General Hospital. But, by this time, Lamont needed a wheelchair and oxygen, which made travel difficult. And even if he could get to Boston, where he had been in close contact with a doctor, he didn’t exactly have hundreds of thousands of dollars tucked under his mattress. When Lamont got the dollar amount from his Boston contact, he called Gaby with the number—$400,000—and laughed, “yeah, I’ll just shit that out right now.”
Lamont never made it to Boston. And he shouldn’t have needed to.
There’s no reason to refuse transplants to patients with well-controlled HIV. In fact, we’ve already seen success with liver, kidney, and heart transplants. Yet the guidelines from the International Society for Heart and Lung Transplantation are behind the science. As part of Lamont’s legacy, two legendary advocacy groups–ACT UP and the Treatment Action Group–have joined forces to change them.
These guidelines don’t make sense anymore. They once did, back before the era of highly active antiretroviral therapy (HAART). At that time, there were two primary concerns. First, whenever a transplant is performed, physicians need to dial down the body’s immune response in order to prevent organ rejection. What would happen, they worried, if they lowered the defenses in patient with an already compromised immune system? Second, because organs are a scarce resource, they needed to factor in how long a patient with HIV would live. This is why most centers considered HIV to be an absolute contraindication to solid organ transplantation. In a 1997 survey of 248 kidney transplant centers, 91 percent said they wouldn’t transplant a kidney into otherwise good candidates, solely on the basis of HIV. But then there was a breakthrough.
“The availability of new antiretroviral drugs completely changed the scenario,” said Alessandro Bertani, Chief of Thoracic Surgery and Lung Transplantation at ISMETT, the Mediterranean Institute for Transplantation and Advanced Specialized Therapies.
There are few reasons why. First, HAART cut down on the infections that are nightmares for the fragile immune systems of transplant recipients. It also put to rest any worry that the organs might be wasted. A recent study in PLOS One found that young people living with HIV have a life expectancy that is similar to the HIV negative population. The success of HAART also created new demand. As people with HIV live longer, their chronic diseases become end-stage ones and they need transplants to survive.
“In the late 1990s, we started to see a very large number of patients referred for liver and kidney transplants,” said Peter Stock, a Professor of Surgery at UCSF who researches solid organ transplantation in people with HIV. But the transplant physicians knew they had their work cut out for them. “People in transplant didn’t know much about HIV, because we’d always been prohibited from transplanting into people with HIV.”
They didn’t just stand by. By 2000, Stock and colleagues performed nine transplants for people with HIV and their work kicked off a series that was joined by investigators in Pittsburgh, Miami, Germany, France, and the UK. A few years later, Stock and a University of Pittsburgh-led research team reported on their multicenter study of liver transplants. What they found turned the conventional thinking on its head. Not only did patients with HIV have similar survival rates within a year, but they also had similar survival rates at two and three years. “These findings suggest that survival of HIV-positive liver transplant recipients does not differ from that of HIV-negative liver transplant recipients,” the authors wrote, “and they suggest that HIV infection should no longer be a contraindication.”
Even with these excellent outcomes, lung transplants posed a trickier problem. After all, the lungs are exposed to the environment, and they are easily bombarded with bacteria, germs, and pollutants. Until the 1990s, lung transplants were rare and survival rates continue to be dismal compared with other transplants.
So when, in 2006, a patient with HIV and cystic fibrosis walked into Alessandro Bertani’s offices in need of a lung transplant, his team’s knee-jerk reaction was to reject him. But then they took a closer look. “We were thinking to decline this patient, until we came to the point that all his numbers, all his exams, medical tests, everything was exactly matching the numbers, medical tests, of non-HIV positive patients,” Bertani explained.
“This guy was perfectly stable and we had a lot of discussion at that point about whether we should think about trying to innovate and push,” said Bertani. They did. In their corner, they had the backing of the director general of the hospital and the Italian National Center for Transplantation. In 2007, Bertani and colleagues reported that the lung transplant was a success. And the patient continues to do well to this day.
Four years later, there was another successful report. This time, the patient was a 65 year old man with pulmonary fibrosis (a scarring and thickening of the lungs that makes it difficult to breathe). He needed a double lung transplant. Like Bertani’s patient, he had an undetectable level of HIV in his blood. And like Bertani’s patient, he made a complete recovery.
If we know lung transplantation has been successful in patients with HIV, then why do some centers still consider the disease an absolute contraindication? One reason is that the guidelines have not been updated since 2006–before these cases were reported.
It didn’t take long for Stephen Helmke, an echocardiographer and research manager at Columbia University Medical Center, to figure out what was going on. After all, he had a front row seat to the fight to change the guidelines for heart transplants. “When a social worker who knew Lamont, after he passed away, came to the floor at ACT UP to report this to us, I recognized right away,” Helmke said.
Helmke, a member of ACT UP New York, linked up with Tim Horn, the HIV Project Director at the Treatment Action Group. They wanted to dig into the guidelines from the International Society for Heart and Lung Transplantation (ISHLT). But they couldn’t dig very far. “If you do take a look at the actual guidelines themselves, there’s really nothing that justifies the absolute contraindication,” Horn said. “There’s no footnote, there’s no citation, that explains why the guidelines committee made that determination as late as 2006.”
They sent a letter to James Kirklin, the chair of the guidelines committee for the ISHLT. They reviewed “the mounting evidence base” and asked that the committee “strike HIV infection as an ‘absolute contraindication’.” Within a day, Kirklin responded favorably and said the committee was in the process of revising the guidelines.
In April, the ISHLT holds their annual meeting, when they will hopefully bring their guidelines up to date–and trigger a rapid change in the policies of many lung transplant centers. “There’s no reason, if you have the degree of expertise in your center, that these transplants can’t be done. So they should be done,” said Jay Fishman, Co-Director of the Mass General Transplant Center.
It should have been done for Lamont Valentin. He had been a private person, until he couldn’t be anymore. In his final months, he didn’t only fight for his own life. He tried to use his great gruff voice to fight for the lives of others, even as time was running out, even as his phone calls and texts weren’t returned, even as the world chipped away at his faith in it. “My son won’t get to know him personally,” LanAnh Nguyen-Valentin, his wife, said about the work of ACT UP and TAG, “but I feel like this is something that our son can proud to say, because of my dad, this has happened for other people.”