Prison and AIDS Update

Issue #126 of AIDS TREATMENT NEWS included an interview with three physicians who work at a California correctional facility in Vacaville -- Drs. Jessica Clarke, German Maisonet and Jan Diamond. Since then, a number of related developments have come to our attention.

Reports of Poor Treatment

The HIV medical care at Vacaville is provided by compassionate and expert physicians. The care for inmates at many other prisons, however, and during transfers between prisons, is inadequate or neglectful. We have been told, by trusted sources, of very ill persons who were housed in a simple infirmary for two months or more before transfer to a medical facility equipped to treat AIDS. By the time they were finally moved, some were sick with infections that long had gone untreated at the previous facility. For example, one man known to have less than 100 helper cells had been experiencing severe headaches for three months without receiving a diagnosis. By the time he was transferred to an appropriate physician, he was found to have very advanced cryptococcal meningitis, renal failure, and hearing loss, conditions which might have been controlled with timely treatment. Another man was transferred with advanced disseminated tuberculosis, and he died three days after the transfer. Diagnosed early, TB is a completely treatable disease.

We were told that a common problem is undiagnosed changes in mental status. HIV-related processes can result in erratic behavior in some people. But in prison, a change in someone's behavior frequently will be labeled a disciplinary problem, so that people who require medical intervention for neurologic infections, or HIV-related dementia, may easily find themselves in "lockdown" instead.

Interview With James Camarillo

After reading the Vacaville interview, James Camarillo, who is now incarcerated there and has actively challenged some of the regressive policies of the California Department of Corrections, contacted us to share his experiences.

DS: James, is Vacaville the only prison that you're familiar with?

JC: No, before this I was at Chino East. That's where I found out I was HIV+. I got no counselling, just notification that I'd be transferred.

DS: How was the care there?

JC: It was poor, even before they knew I had HIV.

DS: How do you feel about the care you've gotten since you were transferred to Vacaville?

JC: It's better; they have three doctors who know what they're doing.

DS: I understand that you have been involved in a class- action suit. What was the basis of the suit?

JC: To get the same education and job opportunities that guys on the mainline have. Segregation is an obstacle to those opportunities.

DS: What about the concern voiced by the correctional system that inmates known to be positive might be targets of violence?

JC: That's changed. Some of us have been educating inmates on the mainline. We're accepted now. A lot of them know that they could have HIV, too, but they don't want to be tested because they don't want to be segregated.

DS: So they could actually be missing out on treatment they may need, for fear of segregation.

JC: That's right.

DS: The rules against condoms -- does anyone have access to them?

JC: Only for conjugal visits, and afterwards you have to return the condoms, used or not. Anyone caught with a condom outside of a conjugal visit gets a disciplinary writeup. And inmates known to have HIV aren't even allowed conjugal visits.

DS: That's outrageous. Regarding treatment information, would inmates make use of printed material if it was available to them?

JC: Yes, they would; in fact, Dr. Diamond here tried to provide some reading materials for us in segregation, but the guys on the mainline need it, too.

DS: It sounds like what you want is what the doctors there would like as well -- an end to segregation, conjugal rights for inmates with HIV, unpressured testing and treatment information for those on the mainline, and condoms for everyone. What would you say to people in prisons elsewhere, especially in other states, where conditions are sometimes much worse?

JC: Legal action. I used to sit in the little yard set aside for us with HIV, reading books that a prison library clerk would bring me. One day I asked him, "How can I ever get out of here [segregation]?" He said "File a lawsuit." I didn't know where to start, so he gave me a book, and that's how I got going. It's the only thing they will listen to.

Interview with Mary Lucey

During a recent state activist conference in May, we met Mary Lucey, who began working with ACT UP/LA after her release from the women's prison in Southern California. Following are highlights of a conversation we had.

DS: Mary, you were held at the California Institute for Women?

ML: Yes, at Frontera. There are other facilities for women, but Frontera is where any woman known to have HIV is sent. During the transfer to Frontera, they told me I had to wear a mask. But the weather was really hot, and I refused to put the mask on. They punished me by turning off the air conditioning. When we arrived at Frontera they immediately took my AZT away from me. They said I had to be evaluated by a doctor first, and be tested for HIV antibodies, have my blood counts done, and then I could have AZT. Well, we're talking about a six-month delay.

DS: Are inmates with HIV segregated at Frontera?

ML: Yes, and in fact, the fear of being segregated discourages women on the mainline or at other facilities from being open about their serostatus, or getting tested to find out.

DS: Just like at the men's prisons. It makes early treatment an impossibility for those people.

ML: And segregation also means no private visits with their kids or spouses, no conjugal visits.

DS: What's the care like in the segregated section of Frontera? Is bloodwork monitored on any regular basis?

ML: Well, the unit is called Walker A, and it has 40 beds. It's surrounded by a white mesh fence that you can't see through. The unit itself houses anyone with HIV, regardless of their health requirements, regardless of their conviction or sentencing status. Bloodwork is drawn maybe every six months. Frontera is the largest women's prison in the United States, but there is no infectious disease specialist on staff; in fact, the chief medical officer of the prison is a psychiatrist with no HIV expertise.

DS: That tells you something about their attitude toward women who are sick -- all they need is a psychiatrist.

ML: Right. It's all in our heads! They do have a counselor for the unit, and she's called "the grim reaper" because of her "you're going to die" negativity. She once asked me "So what is the average T-cell count for a healthy person?" I had to be her teacher. The M.D.s aren't HIV-educated, either. A major problem if you become sick in there is just getting them to know that you're sick. Then, if they're nice enough, they'll try to help. If not, if they think you're faking it, well, you could die.

DS: What about the charges that lack of medical attention has contributed to unnecessary illnesses and deaths?

ML: One time when I was on the mainline, I came down with hepatitis. I was bright yellow, and I'd lost 20 pounds -- I obviously had hepatitis. They gave me an appointment six weeks away. But I marched into the clinic and just said, "Look, I'm seeing a doctor today." So they put me in isolation in the prison hospital, but didn't treat me. Doctors don't make rounds there -- they come by and count you three times a day. I became really dehydrated and scared. Finally I caught a sergeant's attention by beating on the door. When she saw the shape I was in, she ordered juices and medication for the diarrhea and nausea. Another woman, a transsexual, was dead for three days in her cell before they noticed her food trays stacking up. Sometimes medical officers have been caught falsifying death records. One woman who is still quite alive was reported as deceased several months after she appeared at a hearing to testify against the prison. But a lot of women in institutions don't know how to fight for themselves.

DS: If they could, a lot of them probably wouldn't be there. Everything you're talking about sounds like lawsuit material. Is there any legal action taking place now?

ML: There are some class-action suits going on, but they're not resolved yet. We've testified in Sacramento, and were essentially ignored. John Burton [California state assemblyman] was great at the hearings, though. He jabbed the Department of Correction's policy on limiting visits for HIV+ inmates by asking if the Department was worried that incarcerated women might infect their kids by having sex with them during visits. They said "No, of course not". Then he asked if they were afraid they might give their kids drugs. "Oh, no, no. " Finally he said,"OK, I got it. They're performing minor surgery."

DS: The joke was on them, but I bet they didn't even know it.

ML: Well, these women know it. There are some real fighters in there trying to make waves. I know one woman who has been fighting tooth and nail, even with CMV and encephalitis. Now she's ready for a hospice, but there's no hospice to go to. These women call me on the phone and they're crying, they're scared to death. Sometimes I lay awake at night trying to come up with some way to move the sons of bitches who control the correctional system. People who want to support us should write to James Gomez, the Director of Corrections [1515 S Street, Sacramento, CA, 95814]. Tell him we need a real infectious disease specialist for those women. And they have to improve the nutrition of their meals. And we want an end to HIV segregation.

Treatment Libraries Proposal

Joe Guimento, Research Coordinator for the AIDS/HIV Treatment Directory published by the American Foundation For AIDS Research (AmFAR), called us after the Vacaville interview to say that AmFAR also receives a substantial amount of correspondence from prisoners who need current treatment information. Joe proposed to us and to Judy Greenspan of the National Prison Project of the American Civil Liberties Union the idea of HIV "minilibraries" in every correctional institution -- collections of printed material which could relieve individual inmates from having to search for information by mail, and vastly improve the access prisoners in general have to treatment developments.

The libraries could grow in scope as possible, but would begin with subscriptions to some basic community news sources -- BETA, Notes From the Underground, PI Perspectives, and Treatment Issues -- as well as AmFAR's AIDS/HIV Treatment Directory and AIDS TREATMENT NEWS. Prisoners or correctional workers who are interested in establishing such a library should write to Joe Guimento at AmFAR, 1515 Broadway, Suite 3601, New York, NY, 10036.