On October 11 and 12, 2000, women prisoners finally got the opportunity to tell state legislators about the abuse and neglect that they are suffering inside. The HIV in Prison Committee, along with other Bay Area prisoner advocacy groups, participated in and helped to organize the October 11 hearing, which focused primarily on exposing the crisis in care at two of California's women's prisons: the Central California Women's Facility (CCWF), and Valley State Prison for Women (VSPW).
On October 11, HIP along with a coalition of other organizations (including Legal Services for Prisoners with Children, Justice NOW and the California Coalition for Women Prisoners) attended and gave testimony at a legislative hearing held inside. This hearing was called by Senator Richard Polanco's Joint Committee on Prison Construction and Operations in response to serious allegations of abuse and medical neglect by women prisoners and their advocates. Fifteen women prisoners braved possible retaliation to testify and expose all aspects of medical neglect, sexual harassment and abuse inside both prisons, which together house approximately 7,000 women and sit across the road from each other in Chowchilla, California -- the largest women's prison complex in the world.
Some of the most moving testimony was given by three women prisoners who openly spoke about being co-infected with HIV and hepatitis C. These women testified on behalf of many others inside CCWF who are suffering daily due to the prison system's refusal to seriously deal with either of these two life-threatening diseases. Over the past two years, several co-infected women have died from hepatitis C-related liver failure. We hope that some of the policy recommendations are taken seriously and acted upon by Senator Polanco's committee. Clearly the lives of thousands of women prisoners (and men prisoners) depend upon it.
I watched two women die on my yard. If I can see that the whites of their eyes are as yellow as a caution sign then why couldn't somebody else? I watched a woman's waist go from approximately 26 to 60 inches because her liver was cirrhotic. She could not wear shoes. She looked nine months pregnant and every day she asked me, "Am I going to die here? Do you think that is what is going to happen to me?" And there was nothing we could do about it. I know a compassionate release, at least, should be asked for these women. But they are not going to give it to them because you have to get the doctors to say that you have only six months left to live. They don't feel that is necessary because you are not laying flat on your back. I have approximately 10 years left in prison living with both of these diseases. I know 13 people died in 1999 and that scares me. How long will I remain asymptomatic?
I also have a problem with confidentiality at med line. No, I do not take meds and I made that conscious choice based on the knowledge that I have. For the women who have to take meds, these lines last a long time. They have to stand in extreme heat, they stand in severe cold weather just to get their regimen. In my personal opinion, these medications could be administered in their rooms. This is not Valium, this is not Vicadin. These are antivirals that you take for HIV. If you are the only woman standing in line picking up a 3-med package every single day, someone is going to ask what are you taking. A lot of these women have come to us and told us that they don't want to go get their meds because they would rather take them in their room -- why does everyone have to know?
HIV meds should be given in a monthly supply. I feel that women who are on these meds when their prescriptions run out, they should be expeditiously refilled. It is very important that treatment is adhered to. When a woman is positive the yard doctor should explain things to them because many of the women have no knowledge of their treatment. Someone just tells them, "I am putting you on this regimen and you take it." That's not enough. No one is telling her how important it is that she sticks to this regimen. No one is telling her what's going to happen when she takes these pills and her body starts experiencing side effects and she doesn't know what to do.
We have a lady on our yard who had a shingles outbreak. I knew exactly what I was looking at and I watched this woman be turned away and told that those were water blisters. An RN gave her some paper towels so that her underarms would not touch the sides of her breasts and told her to go back to her unit. It couldn't hurt that bad. She went back to her unit and tried to pop her blisters and those that she popped, of course they spread. This woman is now in the treatment center where she needed to be in the first place. I feel that when HIV-positive inmates and hepatitis C positive people come over to that med line and they are telling you their symptoms, someone needs to really pay attention because I know that they know who we are.
I have educated myself with the help of everyone else because CCWF doesn't take the time to take into consideration that some of us who do come into the prison in denial don't know the first thing about our diseases. One of my concerns is about peer counseling. We are not given any type of counseling. There is a peer counseling office and while we have just been assigned a new program by Centerforce, they have had nothing to do with the past two years that I have been here. But as far as counseling, it should not be up to an inmate to have to sit and figure out what my T-cell count is and what it means to me. They shouldn't have to figure out what the rash is on the side of my stomach. They shouldn't have to go into the bathroom when I have an outbreak of herpes in my vaginal area and counsel me.
Another issue that I would like to ask for help on is the special diets. CCWF has no special diets. I am on a protease inhibitor called Viracept. I have not seen a raw carrot or raw celery since I have been there. There are no vegetables that are given to us that are not boiled and soggy. I am not asking them to put out a buffet for me. All I am asking is to help make my medication, my treatment, easier to work for me. I am trying to stay alive in prison.
Since I have been here, I have met literally hundreds of women who are infected with hepatitis C. I met them because I am really open about my disease. I like to talk about HIV and hepatitis C. I like to learn about it because I believe my survival depends upon it. I like to share the information that I have with other women who may not be able to read it so that they can survive. I have met a lot of women who have been incarcerated 10 or 15 years and are just finding out this year or last year that they are hepatitis C positive. And guess what! It was in their file for 10 years. How do you let somebody run around not knowing that they have a life threatening communicable disease? What if that woman goes home and transmits that disease to someone else in ignorance? That whole idea breaks my heart. I don't want anybody to live with what I live with. I mean, I am healthy today. I am running around. I'm jazzy today. In two years, I could be falling apart and I wouldn't wish my disease on another person.
Something like 88% of our HIV-positive women also have hepatitis C because it was transmitted by IV drug use. So TB meds are really liver toxic. The second woman who died, I believe died because she was given TB medication. She never had TB. If a person is not having symptoms, they are not spitting blood, they don't have a fever, they don't have night sweats and you suspect that they have an active TB infection, then you isolate them. You should do a culture. This woman stayed for 14 days in isolation and when she came back her stomach was already distended. They offered to drain her stomach in our infirmary. Our infirmary has no emergency equipment. It's got a couple of gurneys and a curtain. She asked for a six-month chrono [for compassionate release] because it became apparent to her that she was going to lose her life. And this was denied. [She died on October 22, 1999.]
You know, 54% of our female population has hepatitis C. If we have 3,600 women, then 54% is 1,944 women. We are always hearing that we're just prisoners and CDC [California Department of Corrections] doesn't have money for hepatitis C treatment. How come they returned $1.7 million dollars in 1998 that was designated for hepatitis C research and treatment in CDC? They didn't know what to do with it?