On World AIDS Day, Let’s Remember AIDS in New York State is Not History — It’s a Lived Reality

Reginald Brown is a co-board member and leader with VOCAL-NY who lives in New York City.
Leandro Justen

Nearly a decade ago, I attended the initial meetings that led to former Governor Andrew Cuomo’s End The Epidemic (ETE) Blueprint to End AIDS in New York state by 2020. I was one of many experts who crafted this blueprint based on our lived experience and authority on the issue. Across every facet of our issue was a common denominator: housing. Without medically-appropriate, supportive housing — as defined by the HIV And AIDS Services Administration (HASA) — testing, treatment and prevention cannot happen when someone is concerned about when, how, and where they will sleep.

I’m sad to say it’s now 2021, and the state has still not provided sustainable housing for all New Yorkers living who are HIV-positive.

I am living proof that housing is healthcare and prevention. HIV has lived with me since August 1986. That’s 35 years — one year longer than the amount of time I was not HIV positive. As of today, my HIV cannot be transmitted because I have been undetectable since 2003. I joined VOCAL-NY in 2010 because they understood how big of an impact housing had on my treatment. Before it was added as part of the ETE Blueprint, we were fighting for all HIV-positive, income-eligible people living in New York State to get enhanced rental assistance, food stamps and transportation — regardless of how sick they were. And that mission still stands.

In 2013, I stood with VOCAL-NY leaders at the state Capitol to deliver this message. I read the names of the over 200,000 people who lost their lives to HIV as a result of government indifference and neglect. I was arrested alongside five other leaders for not leaving the Capitol building at closing time. Since then, numbers have only increased, while action has all but dried up.

It’s incorrect that the HIV/AIDS crisis is no longer a pressing issue because we aren’t seeing the high death tolls we did 30 years ago. But even now, New Yorkers are suffering. In 2018, nearly 2,500 people were newly diagnosed with HIV. And there’s no doubt that COVID-19 exacerbated this crisis since then, with new HIV clusters popping up across the state because the former governor withheld funds to syringe exchange programs. Beyond the numbers though, New Yorkers are suffering. New York’s homelessness and HIV crisis are forever intertwined, and we need Governor Hochul to recommit to ending the epidemic in New York State — something our last governor failed to do.

Previously in New York City, only people with an AIDS diagnosis or a symptomatic HIV infection were eligible to receive enhanced rental assistance, food stamps, and transportation. Although we won this entitlement for the residents in New York City, former Governor Cuomo governor failed to provide the same entitlements to the rest of the state, jeopardizing his own plan to address the epidemic across the state.

Back then, the state sent the message that people outside the five boroughs weren’t sick enough to get help — a prime example of splitting hairs around a HIV diagnosis. Not only is the virus still life-threatening, but the stigma around HIV/AIDS is more deadly than symptoms of HIV. We now have medications that sustain those of us living with the virus and medications to prevent the transmission. Undetectable means untransmittable. Yet, the perception surrounding HIV is still a barrier to even getting tested to know one’s status.

This legislative session, we can get rid of this discrepancy. There is currently legislation that state lawmakers can act on right now that will help people living with HIV/AIDS across the state — not just in NYC. It is called Point of Access To Housing Services (PATHS), which would provide enhanced rental assistance, food stamps, and transportation to areas outside of NYC. It’s imperative the state lawmakers and the governor act now because too many people living with HIV outside of the five boroughs of NYC are unstably housed, at risk of losing housing, or without housing at all. New York has already failed its goals set for 2020. There’s no more time to waste.

City lines should not define whether those living with HIV get the care they need. A zip code should not be a death sentence. Housing is not only a human right, it’s healthcare and prevention. By passing and enacting PATHS, New York has a chance to provide housing for people living with HIV, no matter where they live. On World AIDS day, we hope our elected officials will recommit to an epidemic that is still alive and well in New York.

Reginald Brown is a co-board member and leader with VOCAL-NY who lives in New York City. They have been HIV-positive for more than 30 years.