Personal Perspective: The Exception to the Rule
I spent the years from 1985 through 1999 in prison, being shipped from one facility to another. During that time, the AIDS epidemic unleashed its fury on my friends and neighbors in those prisons, in the community of women I knew.
Like many AIDS activists outside prison in those years, my grief at the deaths of too many friends propelled me into AIDS education and action. Because prison health care for people with AIDS was all but nonexistent -- and administrators loathe to educate themselves, much less the prisoners, about HIV -- I began participating in AIDS education, counseling and activist programs we prisoners organized for ourselves. Although I am not an expert on HIV treatment in prison, I am its intimate observer. From that standpoint, it has been all too clear to me for many years that medical care for people with HIV in prison in the U.S. does not meet the accepted standard of care.
To be sure, there are decent, intelligent and capable providers to be found in some prisons. But they are the exceptions who prove the rule. And in my experience, every provider who was decent, intelligent and capable was either fired or left prison practice due to severe burnout. And even some of these competent doctors found it hard to look at the HIV-positive woman across the desk as a patient rather than a convict.
For a person with HIV, prison is a crapshoot. The best-case scenario involves being lucky enough to be jailed in a state with real, board-certified doctors, with a minimum of prejudice and ignorance from guards, medical staff and other prisoners, and with a formulary that includes not only all the approved HIV meds but also the drugs needed to prevent or treat HIV-related infections. It also includes being fortunate enough to be locked up in a place where you can get a hepatitis C test -- and treatment, if appropriate.
Some of the worst-case scenarios have been documented in news stories and court cases: deaths caused by callous and incompetent providers; prisoners dying when guards were the ones to do triage; denial of the basic human right of health care. One of my first friends in jail to die of AIDS was not permitted to have her lover at her side as she died -- both were prisoners. She hadn't been told anything about the infection ravaging her body. She died shackled to a bed in the prison wing of D.C. General Hospital. She was serving a two-year sentence for petty theft. At the same time, another positive friend was placed in an isolation cell by guards who would not call the medical staff when she developed a raging fever. Only clamor raised by a few prisoners who discovered the situation succeeded in summoning medical care -- too late. Even in 1994, in a federal prison in Florida, we had to wage a year-long battle to obtain a basic GYN exam for a woman with AIDS. By the time we won, her infections were all but untreatable. She died soon after her release the next year.
Even more frightening than these cruel deaths is the fact that every day, all over the country, prisoners with no voice and no access to media or lawyers continue to suffer from routinely incompetent care and the stigmatization peculiar to AIDS. It makes harsh sense, too: Studies have shown the obvious -- that people whose doctors have experience and knowledge about HIV live longer, healthier lives than do those whose doctors don't know much about HIV. How many prisoners do you think regularly see an HIV specialist?
It's not a mystery why people with HIV in prison suffer. I did my time in federal prison, where the medical care is generally better than in most state prisons. But there was no confidentiality, no say in the choice of your HIV combo, no regular monitoring of organ function and lipid levels, no participation in decisions about your treatment -- and certainly no right to choose your doctor. The concept of patient empowerment -- so basic to HIV care on the street -- is non-existent in prison. In a federal women's prison near San Francisco, a friend, who had struggled to learn all she could about HIV meds, questioned the side effects of the combo she was given, only to be told by the prison doctor that she was "too smart for her own good." The doctor even threatened to charge her with refusing to obey a direct order. Patient disempowerment -- and that was in one of the better prisons.
There is a simple reason for this: Prisons are fundamentally about "security," which means repression. Security concerns trump medical needs every time. This is, after all, a country in which pregnant women prisoners are still shackled to the bed while giving birth. In the federal prisons, women transported to an outside hospital were always handcuffed, waist chained and shackled -- and strip searched. Being strip searched by a prison guard, an unpleasant enough procedure in any case, is even worse when you are recovering from surgery or delivery.
If the attention to "security" isn't enough to make medical care a bad joke, budget will do it. There is a huge epidemic of hepatitis C and liver disease among prisoners. The percentage of those with HIV who also have hep C is higher than it is outside. Yet most states make it all but impossible for prisoners to receive appropriate testing and treatment for hep C -- it's just too expensive. Even Pennsylvania, which did respond to prisoner demands by initiating treatment a few years back, drastically cut the number of prisoners receiving treatment after a short period. Too costly. Yet liver disease tops the list of killers of people with HIV.
Both before and since my release, I've heard people say that prisoners with HIV get better medical care than they would on the street. I did, in fact, meet women who, when they'd been on the street, had rarely gone to doctors. Many of them were diagnosed with HIV only after they were locked up and were no longer doing drugs. But to say that prisoners get good care, or better care than they would outside the walls, is as inane as it is callous. All it tells you is that this very rich, very advanced country takes such poor care of its citizens -- and charges them so much -- that they can conceivably be better off in a jail cell than in an impoverished neighborhood. That is a comment on the corruption of human values in this society. But it is not a reliable opinion that health care in U.S. prisons is good -- for people with HIV or for anyone else.
Laura Whitehorn is a longtime prison activist and a Senior Editor at POZ Magazine.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.