During his years imprisoned within the California penal system in the late 1980s and early 1990s, longtime HIV/AIDS activist Brian Carmichael saw the ways in which people with HIV were discriminated against, ostracized and punished simply because of their status. So, he chose not to get tested.
After he was released in 1993, Carmichael decided it was finally time to get an HIV test. It came back negative. "I was happy -- and surprised," he recounts. Because he continued to engage occasionally in risky behavior, he got tested every six months. Each time, his test came back negative -- until, while back in prison on a parole violation in 1996, a test came back positive.
From his years of education and advocacy around HIV, Carmichael knew that his best course of action was to immediately begin medications. "My viral load was only 700 or so, and I've faithfully been taking meds ever since, for more than 20 years," says Carmichael, now age 53 and incarcerated in New York's Elmira Correctional Facility.
At the same time, he also went public with his HIV status, utilizing the reputation he had gained from the protests and publicity for better HIV care in California prisons to further raise awareness.
"[I was] telling everyone who would listen that a), even someone who is knowledgeable about HIV/AIDS, even an 'activist/educator' like me, can get infected from just one single lapse in judgment," he says. "So, if you aren't careful, it can happen to you. And b), there is no denying the benefit of early testing and treatment."
In 2001, Carmichael moved to New York City. Five years later, in 2006, he was arrested for selling drugs and sent to Rikers Island, the city's island jail complex. For the first two days, he received no medications -- until he obtained a court order. "It was a hassle getting proper treatment," he recalls. "I often had to argue and advocate to make sure I got my meds on time, without any of the dangerous interruptions."
Still, Carmichael concedes that his ability to advocate made his experiences easier than they might have been otherwise. "Most of the guys weren't nearly as knowledgeable as they should have been about their disease, so I always worried about those guys, or about the guys who didn't speak English fluently. If I was doing it all right, and being my own advocate and everything, and I was having a hard time, then what must they be going through?" But, compared with California prisons of the 1990s, the New York City jail system was "so much better."
In 2007, Carmichael was convicted and sentenced to 17 years in prison for criminal sales of a controlled substance. He arrived at Sing Sing, one of New York's 17 maximum-security prisons. Based on its reputation, Carmichael expected repressive and AIDS-phobic conditions similar to those he had experienced in California's San Quentin and Folsom prisons. But that wasn't the case.
The PACE Program: Promoting Knowledge and Acceptance of HIV
"I was so blown away when I got there," Carmichael says. Not only was the prison's medical staff knowledgeable about HIV and AIDS, but so were many of the imprisoned men. Dozens were involved in a program called Prisoners for AIDS Counseling and Education (PACE) and as a result, Carmichael recalls, many "knew just as much as I did, if not more. And, like myself 20 years earlier in California, most of the guys weren't themselves HIV positive, they were just concerned and wanted to join the fight and help educate others."
Carmichael was just starting a 14-month interferon treatment for hepatitis C when he arrived. The regimen left him "feeling like shit, withdrawn and not very sociable." But his reputation had preceded him, and the men in PACE encouraged him to join the program. He did and, before being transferred from Sing Sing, he had completed the prison's HIV education courses and was helping to teach classes to others.
"The difference between New York and California in the '90s was like night and day. Stark," he reflects. "Both prisoners and guards were aware I was HIV positive, and more than 'tolerant,' they were accepting and supportive."
Carmichael knows that this welcoming atmosphere didn't spring fully formed. New York prisons had had darker days when people believed to have HIV were ostracized and sometimes had their cells set on fire.
"I credit the heroic work of the prisoners in the PACE program," says Carmichael, "and programs like KTR (Know the Risks) for bringing about that change, making it safe for [people living with HIV] and advocating to make sure they -- we -- are treated equally and fairly and have access to all the other programs, services, etc., that every other prisoner has access to."
"Know the Risks": Saving Lives Through Peer-to-Peer STI Education
Prison systems can -- and often do -- transfer people from prison to prison. Oftentimes, no explanation is given. This happened to Carmichael in 2009, when he was moved to Elmira, another maximum-security prison approximately 250 miles west of New York City. Elmira had no PACE program, but it did have KTR, an HIV education program run by an ex-cop named Joe Barnett working with the Southern Tier AIDS Program.
Carmichael immediately joined KTR. Now he does a weekly 80-minute basic orientation for new arrivals that covers HIV/AIDS, as well as other sexually transmitted infections (STIs) and safer sex methods. He also helps teach the four-week basic HIV/AIDS education classes and the more advanced six-week course that trains others to become peer educators.
"The range of stuff we teach in KTR goes from the immune system, HIV/AIDS, the timeline, T cells [to] everything about HIV testing, treatment and how it is spread, [to] how to prevent getting infected," Carmichael explains. "We go into male and female anatomy, the reproductive process, bacteria, virus, parasite, fungus, hepatitis A, B and C, all the STIs."
For those who have never been inside a prison, Carmichael emphasizes the courage and fortitude it takes to be a peer educator. "It takes a special person, with special skills, to stand in front of a room full of maximum-security prisoners and talk about HIV or how a condom is used properly."
"Over the 7.5 years I've been here," he continues, "a conservative estimate is that more than 5,000 prisoners have been through the basic class in orientation and more than 700 have taken the formal KTR course. Of that, I'd say more than 100 have gone on to complete the advance courses and to become peer educators themselves, here and in other prisons and [in] the community when they parole. There's no telling how many lives we've saved or even how many infections we've prevented."
Still, he's hoping that HIV/AIDS peer education can reach more people. Carmichael is encouraged by New York Governor Andrew Cuomo's plan to eliminate HIV/AIDS as an epidemic by 2020, but notes, "You can't do this without a solid educational component."
The Next Step: Institutionalizing Peer HIV/AIDS Education as Paid Prison Work
In New York State prisons, in which officials estimate that 2% of the population has HIV, "programs like KTR and PACE have proven their effectiveness and worth," Carmichael says. However, each educator volunteers to teach his or her peers after working a full day at their prison assignment, which is burdensome.
"Trained graduates of the KTR and PACE programs should be assigned to paid positions within the prison," he says, "just like there are paid positions to sweep and mop the cellblock, serve food or wash laundry. I'm talking about the 25-cents-an-hour standard prison jobs."
Carmichael says that he recently spoke with the prison's superintendent about implementing this idea, as well as about having the prison's print shop create educational materials and posters about HIV/AIDS.
"He was interested and supportive and encouraged me to write him a detailed proposal, and [he] promised to study and consider it all," he recalls. "The guy running this [Elmira] prison is open and interested, eager to hear good ideas, but back in the '90s out in California, I would've been labeled a radical and charged with being a member of ACT UP."
Despite Improvements, Testing and Linkage-to-Care Gaps Remain
Still, Carmichael acknowledges that there's more work to do: "There's always room for improvements." Outside organizations that monitor prison conditions concur. Between 2011 and 2013, the Correctional Association of New York, a non-profit advocacy and monitoring organization, visited 18 state prisons and found that, though a high HIV prevalence exists within the system, the Department of Corrections and Community Supervision (DOCCS) failed to identify half of the people with HIV.
Furthermore, the New York State Department of Health found that only 75% of those who had been identified as HIV positive were receiving treatment and that many reported having problems getting their medications, sometimes experiencing interruptions of up to four months.
Nevertheless, reflects Carmichael, "New York [now] is leaps and bounds ahead of California in the '90s. It's a shame we didn't have these types of programs back then, because you can't help but think about how many thousands of lives could've been saved. So, we just keep doing what we can, right? And never forget."