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AIDS Behind Bars:
We Should All Care

January 1997

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

According to the Health Resources Services Administration (HRSA), the incidence of AIDS is 14 times higher in state and federal corrections facilities than in the general U.S. population. Last year more than 3.5 million incarcerated individuals in the United States were released from prison under probation and parole programs. The number of individuals infected with HIV remains unknown because testing and reporting is not a mandatory procedure within the prison system. Mike Shriver, Director of the Public Policy Department at the National Association of People with AIDS (NAPWA), states that while documented cases of people living with HIV disease who are either currently waiting to be or are in the process of being discharged from the penal system continues to increase, incarcerated populations remain invisible in our nations efforts to secure sound, quality medical care for all individuals living with HIV/AIDS.

On July 3, 1995, the Special Officer for the Court of the District of Columbia released a report on medical care in D.C. jails. The report was prompted by an account of the death of a male inmate with AIDS who remained neglected in his cell for 10 days. The inmate died from complications related to AIDS while being transported to the hospital in a wheelchair in a urine- and feces-stained sheet. This incident in the nation's capital is just one example of many similar events occurring in prison systems across the country.

Although prisoners living with HIV/AIDS are sometimes required to live in the near-leper colony conditions of the early 1980s, problems still persist, according to Jackie Walker, AIDS Information Coordinator for the National Prison Project. A glaring paradox continues to exist with regard to HIV/AIDS education in prison. In some prisons inmates are allowed to receive safer sex and HIV/AIDS education presentations, while at the same time denied preventive measures like condoms and dental dams. The distribution of bleach kits and clean needles are also prohibited.

The following are excerpts from prisoner letters received by the National Prison Project from prisoners living with HIV/AIDS:

I should have something to help prevent PCP, for instance. I have been constantly requesting some type of preventive medication to no avail. My T-cell count has dropped below 150 and I am afraid that I may be developing PCP.
(Rosharon, Texas)

I've been positive for about 11 years now, and have been through some hard times. But in July 1996 I experienced something that put me in a state of depression you would not believe. An officer here made a nasty statement to me in front of other inmates. He said, "You're dying anyway, AIDS carrier, you're dying anyway."
(Lawrenceville, Virginia)

I have full-blown AIDS, 43 T-cells. Please send me any information about everything possible. In this jail they give us very little information, especially legal info. We don't get extra food or Ensure. I'd like to know if we have any rights.
(Rendwood City, California)

I'm having problems here with medical charging co-medical payment of $3.00 per visit. There's supposed to be no charge for chronic illness or terminal illnesses; they call this ongoing treatment. We're continuously being charged anyway.
(Madison, Florida)

The National Association of People with AIDS has been involved for some time in various advocacy efforts on behalf of incarcerated populations. The thrust of NAPWA's efforts and those of numerous grassroots, state and national HIV/AIDS advocacy organizations is to address the lack of HIV/AIDS-related services for HIV-positive inmates and to bring to light the many basic human rights abuses suffered by people living with HIV in America's prisons. Information related to severe problems of nutrition and medical care services are issues of paramount importance to people living with HIV. NAPWA regularly receives an amazing volume of mail from prison inmates requesting information on how to better manage their HIV status.

Last year, NAPWA joined a working group sponsored by the National Organizations Responding to AIDS (NORA). Some of the organizations involved are: National Minority AIDS Council, National Prison Project, American Bar Association, HIV/AIDS in Prison Project, Correctional HIV Consortium, Maryland Department of Public Safety and Correctional Services, The Fortune Society, National AIDS Fund, CDC National AIDS Clearing House, Catholic Charities USA, HIV Community Coalition, National Hospice Association, AIDS Action Council, National Women's Law Center, AIDS National Interfaith Network and U.S. Conference of Mayors. The working group also intends to bring national attention to the urgent need to integrate primary and secondary prevention programs and ongoing educational and prevention services within the state and federal prison systems to deal with this catastrophe.

The goals set by the working group are: (1) to expand the wide range of programs and services that are critical for incarcerated people living with HIV/AIDS; and (2) to develop strategies on how to effectively meet these goals by educating and encouraging state and federal legislative officials and those state and federal officials responsible for the nation's penal systems. Listed below are some of the existing problems.

I. Access to Health Care

The most serious problem faced by HIV-infected prisoners is the dearth of adequate medical care. Unfortunately, the incident mentioned at the beginning of this piece is not unique to the District of Columbia. Similar inhumane treatment is experienced by prisoners with HIV/AIDS throughout the country. Tragically, the treatment of incarcerated populations with HIV/AIDS worldwide is much worse than in the United States.

Patients with HIV infection do not receive appropriate medication or physical examinations, and lack access to proper laboratory monitoring of viral levels and T-cell counts. This utter lack of services fosters a system in which inmates suffer with severe complications, despite proven prophylaxis medications that might offer relief. Too many incarcerated men and women with AIDS are allowed to have their conditions deteriorate while many preventable complications of their HIV infection might be avoided.

II. Supportive Services and Counseling

There are very few support systems for prisoners with HIV or AIDS. In many facilities, the staff is either poorly trained or not trained at all to understand the nature of the HIV epidemic. Inmates are frequently given inaccurate or no information about treatment options. In short, prison staffs are improperly trained and are often culturally insensitive or outwardly reluctant to effectively counsel people infected with HIV.

III. Release Planning and Transition to Services in the Community

There are many challenges for recently released HIV-infected ex-offenders, such as securing housing, case management services, and support, which in many cases could be an integral aspect of the discharge planning with the HIV/AIDS service providers that are available in many communities. Unfortunately, comprehensive release planning and transition services are not being provided for the vast majority of formerly incarcerated individuals. Other HIV positive inmates have been denied release based on evidence that they have no place to live, even though community-based services could have been investigated and arranged. Many of these same unfortunate individuals have died in prison from their disease.

IV. Prevention, Education and the Availability of Barrier Protection

HIV-infected prisoners are not provided adequate HIV education about the progress of their disease and how to stave off preventable opportunistic infections. They have little insight into how HIV is transmitted and continue to engage in high-risk behavior during the course of their incarceration and after release.

The World Health Organization defines equivalence to mean that whatever health care and prevention is available to the community at large should also be available to the incarcerated community. If the departments of corrections in the United States took this approach, infection rates and the cost of medical care for the incarcerated would decrease, and many of the pressing HIV/AIDS issues would be addressed.

According to Scott Cozza, HIV Educator, corrections systems in the United States have not responded to the HIV pandemic with any sense of urgency or effective policy. This has contributed to AIDS becoming the leading cause of death in United States' prisons (with natural causes second and suicide third). In addition, prison medical costs have increased in order to treat and provide care for those living with symptomatic HIV/AIDS. It also means that the community at large is now at even greater risk for infection from persons released from prison systems. Only correctional facilities in 20 states and the District of Columbia have any type of HIV education programs for incarcerated populations. This does not mean that programs are in place in every facility in those 20 states, that they have HIV education, or that the education is effective.

Correctional facilities need to adopt effective peer-driven and culturally-sensitive HIV prevention education models. Effective HIV education programs also use behavioral and attitudinal change models and provide educational outreach to the HIV-positive prisoner community.

There are many additional issues that are associated with incarcerated populations such as: discrimination, stigmatism, harassment, substance abuse treatment, the special needs of women in prison, and the special needs of children in detention who may be HIV infected.

In our efforts to bring all these multifaceted issues to the forefront of the national discussions concerning AIDS, the NORA Working Group convened a meeting in December 1995 with the Office of AIDS Policy (OAP). However, OAP Director Patricia Fleming was absent from the meeting. The working group discussed the issues with her staff, including Jeff Levi and Patricia Millan, who stated that they would be affirmatively responding as to how their office could orchestrate a discussion on these matters within the numerous federal government agencies that would be responsible to look into and ultimately work to correct these problems.

Between the dates of March 7 and March 9, 1996, the Centers for Disease Control and Prevention (CDC) and two other national advocacy organizations, the National Minority AIDS Council (NMAC) and the National Association of State and Territorial AIDS Directors (NASTAD) sponsored a conference on HIV prevention community planning at which Ms. Fleming spoke at length about the massive number of HIV cases among women in prison and her commitment to tackle this problem. This recognition suggests that the OAP is preparing to spearhead the necessary federal intervention required to dramatically improve the conditions of incarcerated populations with AIDS.

The next meeting with the OAP was held in April 1996. Discussed was the possibility of having CDC, HRSA, the Department of Justice and the National Institutes of Health coordinate a conference for groups from all over the country to aggressively address the full scope of these issues and to provide a forum in which to develop the national strategic agenda necessary to tackle these problems.

On November 12, the NORA working group convened and approved the previous goals that are going to be presented to gain the support of different national organizations and grassroots groups that are working on the issues of incarcerated populations. After all the groups sign on, we will convene a meeting with these groups for an orientation session to outline where we are and the next steps for the legislative agenda.

On a personal note, I am a person who has been living with HIV for many years. I head NAPWA's efforts to address the issues and concerns of the incarcerated communities, just one part of our ever-expanding portfolio of policy and advocacy issues. This issue is neither sexy nor easy. But it must be addressed and we must somehow get across the message (not only at the federal level, but also among our peers), that incarcerated individuals deserve quality HIV prevention as well as care services. A criminal record should not be the criteria for being able to obtain life-saving and life-sustaining interventions and therapies. Until the needs of the incarcerated communities are embraced and articulated as part of our comprehensive, national agenda, these individuals will continue to fall through the cracks and become needlessly infected.

If you would like more information, please contact Jackie Walker, chair of the NORA Incarcerated Population Working Group, at (202) 234-4830.

J. Homar Pérez is the Community Education Associate for the National Association of People with AIDS. He is also a gay Latino man living with HIV. He strongly advocates for the need to include people with HIV in all decision-making processes, and specifically works to facilitate Prisoners with AIDS (PWA) participation in HIV prevention, education and treatment processes.

Back to the January 1997 Issue of Body Positive Magazine.

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

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This article was provided by Body Positive. It is a part of the publication Body Positive.
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