HIV and Incarcerated Women
"The first woman that died on September 6, 1999, I had seen this woman running around for months. She had pieces of Tampax and Kleenex stuffed up in her nose to stop the flow of blood. Her stomach (she was a little skinny woman) looked like a basketball. . . ."
Judy Ricci, an HIV-positive inmate at the Central California Women's Facility, knew that she was watching end-stage liver disease slowly kill a fellow HIV-positive inmate. Medical providers had failed to realize that the woman's co-infection with hepatitis C had reached a critical point. Ricci made the above statement at a state legislative hearing in October 2000, and went on to describe an encounter with the other inmate two days before the woman's death.
"Her eyes were literally the color of a pumpkin. I had never approached this woman, because while I knew what she had . . . I didn't want to break her confidentiality and I didn't want to offend her. But I couldn't help asking her, 'Do you need some help?' . . . As a person who was informed, I could see and I knew what was happening to her, and it hurt that much worse, but anybody, even an untrained eye, could see that she was going to die. How did they release her from the hospital in this condition?"
In many ways, HIV-positive women are already left with the dregs of this nation's healthcare resources. As the above testimony suggests, HIV-positive women who are incarcerated often get the dregs of the dregs. And providing prevention education to uninfected women who are incarcerated is a tremendous challenge.
Women who seek medical treatment for their HIV infection run the risk of being seen by doctors without any expertise in HIV care. Prison regulations often make it extremely difficult for inmates to comply with complicated instructions on when and how to take HIV medications. Thus they are at high risk for developing drug resistance. Also, inmates often are not educated about the potential side effects of the drugs. Some women are so alarmed by the severity of the side effects that they discontinue their regimens -- an even faster route to drug resistance.
Skeptical or indifferent prison staff are slow to respond to women's requests for medical care -- even urgent requests relating to severe health problems. Incarcerated HIV-positive women and their advocates charge that when the women demand treatment or protest against policies that endanger their health, administrators retaliate with punitive measures.
On top of all this, incarcerated women often see their confidentiality violated when they test HIV-positive or when they seek medical care for HIV infection. Women who are known to be HIV-positive are subjected to derogatory remarks by their fellow inmates and by the staff. This verbal harassment can be devastating -- Dr. Anne De Groot, co-chair of Brown University's HIV and Hepatitis Education Prison Project, recalls one woman who tried to scrub her skin off with a scouring brush after being told derisively that she "smelled like an AIDS patient."
It's no wonder that many HIV-positive inmates don't seek treatment, or that many inmates who don't know their HIV status refuse to get tested. But as dangerous as it may seem for women to speak out about HIV-related issues, the perils of remaining silent must also be considered.
"It really is self-advocacy that gets anybody anything in the prison system," says Judy Greenspan, chairperson of the HIV in Prison Committee of California Prison Focus. "Men are so much better at it than women are."
Paulette Santos-Martinez of Oakland, who learned that she was HIV-positive not long before beginning a two-year prison term, urges HIV-positive incarcerated women to "take pen and paper in hand" and fight for their rights. Santos-Martinez, who repeatedly submitted grievances during her mid-1990s prison term, stresses, "You gotta make that fight for yourself."
Despite the potential for negative repercussions, De Groot's most emphatic message is, "You need to be 'out' about having HIV. Say, 'I'm HIV-positive, and I'm getting educated, and taking care of myself and my sisters because I care.' There needs to be a sense of pride on the part of women inmates, a sense of 'I have this infection, and I'm going to take charge, not let it take charge of me.'"
Family and Community
"I really believe that women are motivated by more than themselves. They're motivated by the communities in which they live, and by their responsibilities to their children and partners," De Groot says, naming a core issue for HIV-positive incarcerated women. "My patients want me to write down their T-cell counts and viral loads and explain to them what it means, so that when they call home, they can explain it to their family members."
When he is asked about this population's greatest concerns, Carlos Arboleda, Director of Treatment Education and Advocacy at the National Minority AIDS Council, says that many women are wondering, "What's going to happen to my children?"
Arboleda also notes that many HIV-positive mothers are intent on passing the lessons they have learned to their children. "When the children visit, [their mothers] want to make sure they're not having unprotected sex -- they don't want it to happen to them."
Unfortunately, making the transition from prison back to the outside world poses major challenges. Santos-Martinez suggests that getting involved in the AIDS community outside of prison is a useful strategy for HIV-positive women who are trying to take good care of themselves. But she observes that many HIV-positive women leave prison maintaining a state of denial about their health. "Some of them go right back to prostituting, without using condoms, and they know they're HIV-positive," she says.
Prevention education programs give some female inmates an invaluable opportunity to learn how to protect against HIV, but these women run into difficulty when they try to implement their knowledge in the outside world. Felicia Davidson, a program coordinator at the Women's Project in Little Rock, Arkansas, hears a common story from clients returning to relationships with men. "Their concern is, 'How will I know if he's been messing around on me?'" When the women ask their male partners to use condoms, Davidson says, the men often refuse, and some men respond with physical violence.
Women have also told Davidson about another common response. "The male partner asks them, 'What have you been doing while you were incarcerated? You must have been fooling around with somebody in there.' He throws the blame on her, and just keeps beating at her until she gives up. Since she's been in prison, she feels like she's not worth anything."
The only advice that Davidson can offer is that women should persist in trying to protect their health. She recommends that both partners get tested for HIV, and that they practice safer sex until they have received accurate test results. Also, "be sure you're in a monogamous relationship before you take that condom off."
Prevention within Prisons
Prevention education programs also raise women's awareness about protecting themselves against HIV and other sexually transmitted diseases (STDs) while they are incarcerated. Although female-to-female sexual transmission of HIV is thought to be extremely rare, it is certainly possible for HIV to pass from one woman to another through blood or vaginal fluids.
Female-to-female exposure to blood and vaginal fluids can occur when one woman puts her fingers or hand in her partner's vagina or anus, as well as when a woman "goes down on" or "rims" her partner (i.e., mouth-to-genitals or mouth-to-anus sex). (There are other female-to-female activities that can transmit HIV as well. Inmates who want more detailed information can request free copies of a brochure called "Woman to Woman: Sexually Transmitted Diseases" from the Whitman-Walker Clinic, 1407 S Street, N.W., Washington, DC 20009.)
Given the relatively high number of HIV-positive incarcerated women in prisons (see below), women who have unprotected sex with each other are definitely taking a risk. And even though female-to-female intercourse doesn't provide the HIV virus with abundant opportunities to spread, it does provide a major gateway for other STDs, such as syphilis, hepatitis B, gonorrhea, human papilloma virus (HPV) and yeast infections.
In many prisons, safer sex remains an elusive goal because supplies such as dental dams, condoms (which, although not ideal, can be adapted for female-to-female protection) and latex gloves are not permitted. Davidson's organization does HIV prevention education in an Arkansas women's prison, but she and her colleagues are not allowed to distribute supplies.
"For some reason, [administrators] don't think sex happens in their prison system," Davidson says. "But it happens, sometimes forcefully and sometimes without consent. There's a lot of homosexual activity in prison. [Women inmates] tell me sex is a God-given instinct, and just because you're incarcerated, your sex drive is not alleviated."
The measures suggested by Davidson's organization provide a disturbing illustration of the plight facing sexually active inmates. "We tell them to use bread sacks, cookie wrap paper, any kind of barrier to keep from sharing body fluids," Davidson says. The strategy: some protection is better than none at all. (Author's note: latex barriers such as condoms, latex gloves and dental dams are the ONLY barriers recommended for reducing the risk of HIV transmission. Anyone who uses any other materials should keep in mind that alternatives to latex barriers could be significantly less effective.)
HIV-Positive Women Taking Charge
As the prohibition against safer sex demonstrates, one of the most pervasive challenges facing prisoners is their lack of control over their circumstances. How can an HIV-positive woman living in such a tightly regulated environment exercise any influence over her well-being?
While the obstacles may be monumental, the fact remains that some HIV-positive women inmates are taking charge of their physical and emotional health to a surprising extent. Greenspan, who has worked with many HIV-positive women inmates in her long activist career, recommends a concrete strategy that is extremely important: use the available resources (such as the prison library and information mailed from outside) to learn as much as possible about HIV, so that you can become your own medical advocate. "This means going in to the doctor knowing about everything from what your viral load means to what the newest drugs are," she says.
Greenspan illustrates her point by describing a California prison where HIV-positive women were being treated by a retired pediatrician with no expertise in the AIDS field. Time after time, the women who had done their HIV homework told him what they had learned -- and this particular doctor listened. "By the time he left, he knew a lot about HIV."
Even in the absence of supportive relationships, Santos-Martinez maintains that there are still ways for HIV-positive women to protect their welfare behind bars.
"You can always do something," she says emphatically. If nothing else, she urges, "keep a positive mind, and be strong, and hold your head up. And when you get out of prison, go in the right direction."
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This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware. Visit TPAN's website to find out more about their activities, publications and services.