December 17, 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.
-- Lamont Valentin (1984 - 2013)
Valentin, a 29-year-old HIV-positive man, died on December 3rd on a New York City bus. He might still be alive today were it not for a discriminatory and outdated medical practice rooted in the belief people living with HIV do not make viable transplant candidates.
As reported by POZ.com:
Born with HIV in 1984, Lamont struggled with numerous bouts of AIDS-related pulmonary infections. Though he persevered and was eventually able to access drug regimens to keep his viral load in check and his CD4 out of the red, there was no reversing the damage done to his lungs. Tethered to an oxygen tank and a litany of medications to manage the symptoms of his lung disease and its resulting pulmonary hypertension, Lamont's only option for long-term survival -- to watch his own son grow and flourish --was a double lung transplant.
People living with HIV are routinely denied even being placed on waiting lists for transplants because of a premise that they will have a low life expectancy rate - something that has changed dramtically over the last 20 years due to advancements in treatment, and something that needs to be challenged with more people are living longer with HIV.
Valetin's death is made more tragic by the fact that last month President Obama signed S.330, the HIV Organ Policy Equity (HOPE) act, which according to the AP, "lifted a ban on research into the possibility of transplanting organs from one HIV-positive person to another." A step in the right direction, but one that does not guarantee a cultural change within the medical profession in which the lives of those living with HIV will be valued as the same as other lives.
Prevented from securing a transplant, Valentin began to reach out to others to activate around the issue. After seeing a documentary on AIDS activism, he had a friend reach out to ACT UP and asked him to tell the group his story. ACT UP is encouraging those on Facebook to use the image above as their profile pic, and post it with the following text:
I changed my profile pic to one of Lamont Valentin because I believe HIV+ people should be considered for all organ transplants. Lamont recently died on a NYC bus because his HIV+ status disqualified him from getting on the lung transplant waiting list even though he was otherwise healthy. Hospitals in other states have done successful lung transplants on HIV+ people, but NY State disqualifies people based on HIV status alone. NY State should pass Lamont's Law to remove the automatic HIV disqualification from organ transplant guidelines.
On Wednesday, December 18, ACT UP is hosting a Vigil in Valentin's honor at 6 PM at Rockefeller Center. Visit their Facebook page for more information.