Certain topics are taboo in prison. Near the top of that list is HIV.

More than 40 years after the virus first became known, HIV remains a global epidemic. Despite effective medications and preventative measures, the number of people living with the virus continues to trend upward, in part because medical advancements have allowed people with HIV to live longer.

Still, the incarcerated population is at a much higher risk. The prevalence rate of HIV in the U.S. in 2019 was 380 per 100,000 people, according to data from the Centers for Disease Control and Prevention. The prevalence rate inside prisons is almost three times as high, with 1,144 cases per 100,000 people in 2021, according to Bureau of Justice statistics. 

Despite the incarcerated being much more likely to contract the virus, many are hesitant to speak up about how they’ve been affected. 

At a prison in the Catskill Mountains, where I used to be incarcerated, some men were trying to buck the trend.

The men were part of HIV awareness groups, including one called Prisoners for AIDS Counseling and Education, or PACE. HIV is the name of the virus, while AIDS “is the name of the syndrome a person develops after HIV has so severely weakened their immune system that they’re at risk for developing illnesses a healthy immune system would typically fight off,” according to The Body, an online site dedicated to covering the HIV community.

Developed for the incarcerated, by the incarcerated, the primary focus of PACE is raising awareness to curb the stigma surrounding HIV. It also teaches safe sex practices and informs participants about other health emergencies such as hepatitis. PACE follows the model of a predecessor program established by incarcerated women in Bedford Hills Correctional Facility, called AIDS Counseling and Education, or ACE. 

After establishing itself at Eastern Correctional Facility in 1989, PACE expanded to many prisons across New York state. One of those prisons was Sullivan Correctional Facility, just 23 miles west of Eastern, where I was incarcerated until recently. Sullivan closed in November and the prison population, myself included, has been moved to new facilities.

Before the prison closed and we went our separate ways, I heard some of their stories.

Scotty Blue

Scotty Blue is an older gentleman with a usually serious demeanor. When he relives his experiences with HIV, however, he becomes animated. Blue tells these stories in rapid succession, sometimes rising from his chair as he gestures for emphasis. Blue, now 67, has been living with the virus since 1985. With no treatments available to him at the time, he didn’t have much hope for his future. 

“When I found out I had it, I just said, ‘F— it.’”

Now, Blue takes a different approach. He works with PACE and other HIV/AIDS awareness groups whenever he gets the chance. Not only does he advocate for those living with the disease, but also for broader prevention methods. “When I was in Green Haven, these guys were talking dumb shit during an awareness event,” he said. 

When hecklers in the crowd had said that if you didn’t have anal sex with a woman, you would be protected from contracting the virus, Blue stood up and explained the more complicated truth. Blue believes that safe sex and awareness are key to ending the HIV epidemic.

Andre Smith

Andre Smith has spent the last 23 years behind bars. Smith is contemplative and avoids frivolous talk. He also has a long history with HIV/AIDS. Despite not living with HIV himself, the virus has been a part of his life since before he entered prison.

In 1989, when Andre was just a teenager, he noticed a drastic change in his mother’s appearance. 

“She was beautiful,” he said, when he recalled the story as the keynote speaker at the 2023 World AIDS Day event at Sullivan. “Then she started to look really sick and frail.”

Shortly after, his mother revealed she was HIV positive. Fear of the virus was at an all-time high then. People living with the disease were cast to the lowest of levels of society. Smith’s mother was struggling on her own and in dire need of help.

“I would drive my mother to my girlfriend’s house in Bloomfield,” Smith said. “My girlfriend would help out because her mother also had HIV.”

Just a few months after revealing her diagnosis, Smith’s mother was dead. “When they pulled the sheet back at the hospital, she looked like a skeleton,” he said.

Nearly a decade later, in 1997, Smith landed in Southwoods State Prison in New Jersey. His stepfather was also incarcerated there, and word was he wasn’t doing well. Housed in another building, Smith made attempts to see him, but was ultimately denied by the administration. 

Shortly after, his stepfather died from AIDS.

During this time, Smith reconnected with his biological father, who was also HIV positive. Smith could hear the fear in his father’s voice when they spoke on the phone. “He just kept apologizing for all of the things he did,” Smith said. 

Within months, AIDS killed Smith’s father too.

Smith’s experiences led him to becoming a facilitator for PACE in April 2024. He took pride in this new role. Smith always made himself available to participants, as well as anyone else curious about HIV/AIDS.

Chauncey Dillon

In September, just days before I left Sullivan, I sat at a table bolted to the floor in my prison block across from Chauncey Dillon. 

Dillon has no problem sharing any of his experiences, whether good or bad.

In the late 1980s, when Dillon was a teenager, rumors swirled that his favorite uncle had AIDS. Not one to hold his tongue, Dillon sat down with his role model and asked him. His uncle informed him that although he was HIV positive, it hadn’t progressed any further. 

“He told me that if he took his medications and maintained a healthy life, he’d be all right,” Dillon said.

Dillon’s uncle taught him the importance of safe sex and not sharing needles. Throughout his 21 years in prison, Chauncey has been a part of multiple HIV awareness programs. Though his uncle played a role in his joining these classes, Dillon says his interest is bigger than that. 

“It’s about empathy and overall humanity,” he said.

Vulnerability turns into activism

The three men have turned their vulnerabilities into activism. Smith and Blue have worked with PACE, while Dillon has worked with other HIV awareness programs. They are a part of a growing number of incarcerated people who are challenging the stigmas of the past. Without meaningful dialogue around HIV, prisoners will continue to be much more susceptible to contracting the virus.

In May 2023, I was approached about becoming one of the coordinators of PACE. The program was at a halt after the last coordinator had left the prison.

I didn’t feel like I deserved the position. I had used degrading language in the past: Dirty. Disgusting. Monster. Then I thought about how these same labels were used to describe me after I pleaded guilty to murder. I also thought about my father. When I was young, he would tell me stories about his uncle who died from AIDS. They were close and I could tell it weighed heavily on him. 

I accepted the position and held classes up until July 2024, when it was announced that our prison was set to close.

More than half a million people died last year from HIV-related causes. Those numbers haunt me. But, even after hearing so many gut-wrenching experiences, I still have hope that there can be an end to the epidemic.