One Monday night in December of 2013, ACT UP/NY's weekly meeting bustled with an energy reminiscent of earlier times. Issues about home-grown action campaigns, educational efforts, digital activism, and a timely prevention agenda were scrawled on the agenda board. New members were angry about rising HIV infection rates among young gay men and transwomen of color. Some had been inspired by recent documentaries on ACT UP and felt the need for direct action to end the AIDS crisis. And some were returning veterans like myself who'd picked up passions and practices set aside decades ago.
We all knew that the fight is far from over. Stigma, criminalization, lack of housing, poor access to care, and a host of other issues still plague people with HIV. True, some gains have been made -- although they are often limited to the privileged, not accessible to all, and under the constant threat of political whim -- but none of these problems can be set aside.
That December night, ACT UP veterans Adam Melaney and Kate Barnhart brought the story of Lamont Valentin to the meeting. Born with HIV nearly 30 years ago, he had fought AIDS in the crib and on the playground as we fought it on the street. But Lamont had just lost another fight -- the fight to get a lung transplant -- which he needed due to years of lung infections. He was denied a lung simply because he was infected with HIV. He had recently died.
As I heard Adam and Kate speak of Lamont's defeat, I recognized what a tremendous struggle this was. The road to an organ transplant sounded like an obstacle course.
In the maze of policy around organ waitlists, people are required to prove things like domestic stability. In much the way adoptive parents must show they can care for a child, organ recipients are deemed best able to care for themselves (and the organ they will receive) when they have food, shelter, and a family.
Unrelated health problems often prevent access to organs. Other diseases or conditions, such as a high HIV viral load, opportunistic infections, asthma, diabetes, hepatitis, or substance abuse could make it unlikely for people to recover from the transplant, or would severely limit life expectancy after a transplant.
I knew of heart transplants to people with HIV. Larry Kramer, one of ACT UP's founders, had a liver transplant. He broke a barrier because of his influence, and I knew that kidney and liver transplants to people with HIV were occurring more frequently. I strongly hoped that the transplant centers' refusals for Lamont were based on current science and transplant ethics.
Unfortunately, we soon learned that none of the transplant centers had been required to explain a thing. All they had to do was point to the guidelines published by the International Society of Heart and Lung Transplantion (ISHLT). Last updated in 2006, they describe HIV as an "absolute contraindication," meaning that centers can refuse anyone with HIV for transplant -- without rationale or justification.
The grief was palpable that night, and moved all of us to action. Preparations were quickly made for a Memorial March and Mourning at the Rockefeller Center Christmas tree. A group from City College carried a large banner saying "No Xmas for Lamont!" Clients of his from Streetworks, colleagues from Camp AmeriKids, friends and family, and dozens of ACT UP members descended upon Rockefeller Center. We marched just behind the Christmas tree, chanting and singing repurposed Christmas carols to tell Lamont's story. By expressing our collective, tangible loss, we were bearing stark witness to outdated science and unjustifiable policies.
Organ failure seems rare, but people with HIV suffer from it all too often. Many who have suppressed viral loads remain at risk of organ failure due to periods of untreated HIV infection, other diseases, drug side effects, and aging.
Unfortunately, the availability of organs for transplant is low, and deciding who gets them is an ethical challenge. The surgery itself is risky for both the recipient and any living donor. Medically unstable people often may not survive the surgery or live to use the organ. And in order to keep the immune system from rejecting the organ, large doses of immune-suppressive drugs must be taken for long periods of time.
All of these factors affect the order of people on the waiting list, and whether they get on the list in the first place. The list is administered by the United Organ Sharing Network, or UNOS. Professional organizations like ISHLT publish guidelines suggesting the best medical practices for people before, during, and after transplant.
For many years transplants weren't offered to people with HIV, since they did not have a normal life expectancy. The thinking was that someone without HIV would benefit for a significantly longer period of time. Not so today. Updated and improved guidelines for transplants for people with HIV are important, since HIV-positive recipients often can have a normal life expectancy.
Managing organ rejection with immune-suppressive drugs in someone with HIV was once near impossible. With earlier HIV drugs it was extraordinarily difficult, but with newer drugs like integrase inhibitors, drug interactions are much less of a problem. There are even drugs being studied that inhibit both HIV and organ rejection. For all of those reasons and more, it's time for transplant equity.
Fighting for Transplants
Tim Horn, who directs HIV research and policy for the Treatment Action Group, wrote to the lung transplant team at Columbia University for an explanation of its refusal of Lamont. There was no response. After the ACT UP demonstration, a letter was sent to the ISHLT demanding a change in the guidelines along with ACT UP's participation in revising them. As long as the guidelines refused people with HIV out of hand, no center would ever have to offer any reason for denial.
ACT UP was informed that changes to the guidelines were coming soon, and that they would meet our demands. We have since been told that we could review them before a final decision is made, but we have not have a hand in their drafting.
The news that heart and lung transplant guidelines will soon be revised is a great opportunity. We must work to ensure that the new guidelines are realistic and fair to people with HIV. And we must celebrate every victory and use it to cast a light on the thorny struggle to make sure the new guidelines are followed.
HIV Transplant Activism
Even though the new guidelines will state that transplants should be considered for people with HIV, transplant centers can still refuse applicants based on the other reasons stated above. The new guidelines will make it more difficult for centers to flat-out deny lungs and hearts to people with HIV, but they won't require them to transplant organs into people with HIV. They will not even require centers to offer reasons for denial. That will be the job of HIV transplant activists.
We must demand that people with HIV are included on advisory boards at UNOS and professional transplant societies. Since these organizations may not value an HIV-positive life as highly as an HIV-negative one, they need HIV advocates to ensure that the most current scientific information about HIV is considered. We need people who think first about our interests -- who can report on any policy that disregards our needs.
The natural first instinct -- to demand transplants for all people who need them -- is not realistic. Not everyone who needs an organ transplant is able to survive and recover from the surgery. Also, the number of those who need organs and are good candidates is much larger than the number of organs available.
Policies have been proposed that would increase the number of potential donors. For example, if the option to list yourself as an organ donor on your driver's license was opt-out rather than opt-in, the supply of organs would greatly increase because people would have to choose if they did not want to be a donor. Compare this to the current policy for people with HIV: we are not allowed to donate organs.
The HOPE act, signed into law last year, aims to change the blanket exclusion of people with HIV as organ donors. The law allows research on organ transplants between people with HIV. This could make more organs available for transplant into people with HIV. What should not be the end result is a "separate but equal" organ pool. We must be vigilant in demanding access for people with HIV to all available UNOS organs.
There is one important shortcoming in the proposed guidelines. They will be written at the lowest category of authority, that of "expert opinion." In simple terms, a transplant center could declare, "We're experts and we do not agree that people with HIV should be eligible." Stronger guidelines require published studies of successful transplants, combined with data demonstrating specific need for transplants in people with HIV.
Organizing registries for HIV-positive people with organ failure would prove the need for transplants, build solid evidence of successful transplants, and help to get more people the care they need. Such a registry would make it far easier for advocates to identify and support people in need. With this information, we could move on transplant centers that refuse to list HIV patients, demand strengthened guidelines from societies, legislate requirements to justify denial, and promote organ donation at large.
The fact sheet we printed for Lamont's Memorial March ended: ¡Lamont Valentin presente! He is present, reminding us all that no matter how much we seem to have accomplished in the fight against AIDS, people are dying even today. As before, they die from the effects of the virus and from wrong-headed policies fraught with silence, shame, apathy, and fear. They are dying from the poor science that persists and enables those enemies of health. But as before, people with HIV and their advocates are taking on this fight -- in Lamont's name.
Stephen Helmke works in cardiology research and is a long-time HIV activist.