December 18, 2013
I'm not fighting for my life, I'm fighting for the lives of all these other people who have not been able to find help. We need to change medicine. We need to make history. For my son to be able to say, 'That was my dad ... he started this.' That would be amazing.
-- Lamont Valentin
New York City -- On Wednesday, December 18th at 6 p.m. in Rockefeller Center, ACT UP/New York will hold a demonstration "In Loving Memory and Outrage" for Lamont Valentin. Born with HIV in 1984, Lamont died at age 29 on a New York City bus on December 3rd -- only days after World AIDS Day and the signing of the HIV Organ Policy Equity (HOPE) act by President Obama.
But despite the HOPE act, which now allows HIV-positive people to donate organs to their HIV-positive peers, people living with HIV who otherwise qualify for transplants still face unfair barriers. Lamont, spent the last year of his life with his wife and son trying to be listed for lung transplant at New York-area transplant centers, beginning with New York-Presbyterian/Columbia University Medical Center. Even though he had his HIV under control and a stable immune system, in every case he was denied listing and was told that a lung transplant for him would be "contra-indicated," a term which means inadvisable. Lamont was turned away without further testing.
YouTube of Lamont (additional video available):
"The great deal of research that has been conducted over the past fifteen years, particularly involving people living with HIV undergoing kidney and liver transplants, has consistently demonstrated that survival rates of both the patient and the organ received are, in many cases, on par with those seen in HIV-negative individuals," said Tim Horn, HIV Project Director at the Treatment Action Group (TAG).
"The science supporting organ transplant surgery in people living with HIV boded well for Lamont and bodes well for others in desperate need of donor organs."
After surviving childhood opportunistic pneumonias, and years of doctors telling him that he wouldn't live for long, Lamont grew to be a strong, loving man who worked with Streetworks and Camp AmeriKids, organizations that serve adolescents and children with HIV. Although he never smoked and had no other health complications, eventually his earlier lung damage led to lung failure. This developed about the time of the birth of his son, Mason, who was an unbounded joy to him. Determined to live for his son, Lamont, along with his family and larger support system, began to seek treatment for his lung failure.
Lamont and many other people living with HIV face an organ transplant policies that are slow to catch up with present-day science and treatment. In 1988, professional medical societies published guidelines that prohibited organ transplantation for or by HIV infected individuals. As treatments and survival rates began to change, successful transplantations were performed, leading the kidney- and liver transplant organizations to remove HIV from the list of disqualifying conditions, enabling those transplantations to go forth with cautionary management and scrutiny.
In 2009, the Organ Procurement & Transplantation Network (OPTN) revised its policies on HIV status in recipients. It reiterates an earlier position that: "A potential candidate for organ transplantation whose test for HIV is positive but who is in an asymptomatic state should not necessarily be excluded from candidacy for organ transplantation, but should be advised that he or she may be at increased risk of morbidity and mortality because of immunosuppressive therapy." It is important to note however that HIV agents not then commonly in use can safely manage the interaction between HIV therapies and the immune-suppressive drugs used post-transplant.
In spite of successful lung and heart transplantations into HIV-positive people, the International Society of Heart and Lung Transplantation (ISHLT) guidelines still list HIV infection as an absolute disqualification. Transplant centers in other states do perform transplants for people with HIV. There are even reports of people with HIV in New York being listed for lung transplant, with the provision that their T-cell counts improve. But Lamont was never offered that provisional listing at any New York-area center.
The Columbia University Medical Center's Center for Advanced Cardiac Care has performed twelve heart transplantations to HIV-positive recipients, even though heart transplants are subject to the same guidelines as lung transplants.
Even with these examples of success, Lamont was not considered for a lung transplant by multiple hospitals. "I truly see Lamont as a national hero, a man who survived so much adversity -- and through all of the darkness was able to create a meaningful, joyful life and a loving family," said Adam Melaney, a man who became friends with Lamont when facilitating a support group for HIV-positive youth.
"When he was in my support group -- the thing that stood out to Lamont was that he wanted to set goals to be the person he could be. He inspired other young people to see the best in themselves and reclaim any lost dreams," Melaney said. "As someone who has worked in New York City hospitals, it was appalling to watch as the system that was entrusted to save his life ended up sentencing him to death."
There's no doubt that Lamont's HIV status played a negative role in his qualification for transplant listing, Indeed, as long as HIV is an absolute disqualifier, fair transplant listing is out of reach for people with HIV. Stephen Helmke, long-time AIDS activist and medical research manager stated, "It is simply unjust, inhumane and unscientific to leave the present guidelines in place."
To publicly mourn that Lamont will be absent for Christmas, join ACT UP and Lamont's family and friends in a peaceful caroling and ceremony at Rockefeller Center -- the first step in a campaign to reform New York's outdated transplant guidelines that could send more people living with HIV to an early death.
Date: Wednesday, December 18th
Time: 6 p.m.
Location: Rockefeller Center