By Timothy Hinkhouse
From PHN Issue 27, Winter 2016
In the mid-1990s, it was brought to the attention of the health staff at the Oregon State Penitentiary that an HIV/AIDS education program needed to be assembled to educate the population about this “scary new disease.” The Oregon Health Department contractor who was doing the HIV testing and counseling at the time brought it to their attention because she lost her brother to AIDS and she wanted to help those still alive. A team of incarcerated people who worked well together put together an outline for an education program, the HIV/AIDS Awareness Program (HAAP). We came together because we were on the same page about the necessity of reducing the rate of new infections and clearing up prevalent misconceptions about exposure and transmission.
I was the most known HIV positive person, so I was asked to work with office staff to put together a newsletter. I was responsible for answering questions that personally affected me, such as how the disease affected me physically, mentally and emotionally. As I got to know the HAAP staff, they asked me questions that people in general population had asked them, and then these interactions would be published in the newsletter.
Our program sponsor, who was employed by the health department, was the perfect person to get us community contacts. With her support, we were able to make connections with major HIV drug companies who came in to answer questions. There were doctors, college professors, Red Cross personnel and other people in the health communities that would come into the penitentiary to educate. At one point, we had college-level classes being taught to incarcerated people who wanted to learn the same stuff as an epidemiologist. We got this by reaching out to some colleges in Oregon and various professors from the biology and other academic departments to help put a curriculum together. We used resources from the Red Cross and local health department and faculty from the Oregon Health Sciences University in Portland to facilitate classes.
Incarcerated people who took the classes became peer educators to teach future classes. There were courses that were really tough to pass, yet vital to making us the best educators we can be. I was a Red Cross–trained peer educator who had to pass stringent testing in order to be effective.
Unfortunately, after a homicide that happened where the HAAP office was, we were shut down and all the education stopped. The program was thinned down to a skeleton crew. The incarcerated person running it stepped down in frustration about HIV becoming a topic of less importance in 2004, when all the lawsuits were happening over the lack of hepatitis C treatment in the Oregon prison system. The new focus based on federal funding became centered on hep C, which is why HAAP program became the Hepatitis HIV/AIDS Awareness Program (HHAAP). I was asked to step in to get it back up and running, which I tried for about two and a half years. I could not get backing from the administration or medical to get the program going, even with all of our outside contacts making calls into the prison. I stepped down.
How to start an awareness program
If someone reading this wants to get an HIV/AIDS program up and running in your prison, I would suggest that you have contacts in high places throughout your state. Prisons all across the country are ruled by bureaucrats and all their red tape. If you run into political situations with staff that want to shut you down, go to outside entities such as prison watchdogs. Prisons hate getting calls from people in the community concerning the lack of treatment for people in prison, especially if they are in a class federally protected by the Americans with Disabilities Act like people living with HIV.
There are several organizations that deal with HIV discrimination, such as Lambda Legal (120 Wall St., 19th Fl., New York, NY 10005; collect calls: 866-542-8336) and the Sero Project (P.O. Box 1233, Milford, PA 18337).
Also, get the institution’s medical department on board. If you can, contact local HIV organizations, local state health departments, and the state epidemiologist at the federal Department of Health and Human Services for support.
The bottom line is this: appeal to the good publicity a HAAP program can bring the state you are in. Introduce it as a pilot program for the entire state, showing how it’ll benefit everyone in all the prisons. Try to find an organization or a single person to help the program become a nonprofit organization, so it won’t cost the state any money. There are tons of grants out there that will be given if you have grant writers to get them.
I wish you all the best of luck fighting discrimination and less than optimal treatment for those living with HIV.