by Jackie Walker, ACLU

On December 9, 1998, Michael Van Straten was found dead in his cell at the Corcoran State Prison in California. Van Straten, who was HIV-positive and also epileptic, grew distraught over ongoing delays and denials of the medications he so desperately needed to ease his suffering. Days earlier he had been denied a transfer to the California Medical Facility in Vacaville where he believed he could have received a higher level of medical care and treatment. In his despair, Van Straten hanged himself with shoelaces and torn bed sheets only hours after he had been released from suicide watch. The suicide note he left behind expressed hopes that his death would help to focus much-needed attention on the medical obstacles faced by over 200 prisoners living with HIV and AIDS at Corcoran State Prison.

Van Straten's death emphasizes at least two key issues that prisoners living with HIV/AIDS are confronted with on a daily basis. First, the delays and denials in receiving the appropriate medical treatment are a routine matter. In this case, Van Straten was also denied medication for epilepsy despite having epileptic seizures. The medical staff at Corcoran often ignored his complaints about these and other health issues. Second, the medical needs of prisoners living with HIV/AIDS who are placed in administrative segregation are forgotten or altogether ignored. Prisoners are usually put in administrative segregation for disciplinary reasons such as fighting or failing to obey an order. At the time of his death and for reasons beyond his control, Van Straten had been put in administrative segregation after injuring himself during an epileptic blackout.

Over the past few years there has been a growing recognition of the HIV/AIDS epidemic in prisons across the country. Organizations like the American Public Health Association and the Presidential Advisory Council on AIDS' Subcommittee on Prison Issues have released recommendations on HIV/AIDS in prisons. Conferences on HIV/AIDS in prisons have been sponsored by a range of organizations such as the AIDS Education and Training Centers and the National Association of People with AIDS. Additionally, the recent 1999 National Conference on African-Americans and AIDS, the publication of the book Prisons and AIDS: A Public Health Challenge, and articles in the Journal of the American Medical Association have explored the serious concerns that revolve around the issue of prisoners living with HIV/AIDS. However, a systematic change within prisons has not evolved with the increasing numbers of HIV-positive prisoners.

Actual policies and practices have been slow to change as evidenced by Van Straten's suicide. Prisoners living with HIV/AIDS face a multitude of daily battles including delayed appointments with infectious disease specialists, lack of HIV/AIDS treatment information, violations of confidentiality, and exclusion from a variety of programs such as work release and food service jobs. Although prisons may have written policies that prohibit this type of conduct, current practices by prison staff are often the opposite. Public health is affected when prisoners living with HIV/AIDS return to their communities sicker than they would have been if they had received adequate medical care.

According to the Bureau of Justice Statistics report, HIV in Prison & Jails, 1995, 2.3% of all state and federal prisoners were HIV-positive. In 1995 there were over 24,000 prisoners living with HIV in state and federal prisons. The HIV infection rate was more than four times that of the general community and AIDS cases were more than six times the rate. These rates are even more disturbing when gender is considered.

In 1995 the HIV infection rate was higher for women than for men in every region. A review of state prisons between 1991 and 1995 found the number of male prisoners infected with HIV increased 28%, while the number of female prisoners increased 88%. A recent study shows a continuation of this gender disparity. According to a study of HIV infection rates among prisoners in New York State from 1987 to 1997, HIV infection rates among women prisoners remained high and stable over this period. The report found 18% of women prisoners were HIV+ as opposed to 12% of men prisoners. During the same period a 20% decrease in HIV infection among injecting drug users (IDUs) who were male was noted. Although IDUs also declined among women prisoners from 28% in 1988 to 12% in 1996-97, researchers noticed an increase of high-risk sexual behavior among women.

These numbers dramatically illustrate a continuing crisis in HIV/AIDS in the prison system. As the millennium approaches prisoners remain the most under served population in the HIV/AIDS community. They are a population subject to arbitrary legislative changes and a population in need of drastic legislative and policy reform.

Legislative and Policy Changes

Legislation in regards to HIV/AIDS and prisons has focused on areas such as HIV testing and compassionate release programs. HIV testing has been the issue legislators have focused on. Currently 17 states and the Federal Bureau of Prisons (FBOP) require mandatory HIV testing of prisoners. The prison system in Michigan tests all prisoners upon entry. Other systems like the FBOP tests everyone exiting the system. In Missouri, both methods are used. The remaining states provide voluntary testing. Most of these policies have remained in place since 1990. Nonetheless, recent changes in the testing policies of several systems deserve closer scrutiny.

In the past few years two prison systems have changed their HIV testing policies without legislative measures. In December 1997, the Texas Department of Criminal Justice revised their HIV testing policy requiring routine testing of prisoners. Under the new policy prisoners are frequently tested but have the option to refuse. In July 1998, the South Carolina Department of Corrections (SCDOC) changed their policy to mandatory HIV-testing. In addition, the SCDOC has instituted a policy of segregating prisoners living with HIV/AIDS. No other state has formally reinstated segregation in over a decade.

Two new pieces of legislation have the potential to impact HIV/AIDS and prisons in 1999. In Florida, Bill 0711 would require mandatory HIV testing of inmates in the prison system. Prisoners would be tested within 30 days of admission to a prison. The bill would permit random HIV testing of prisoners as well. It would also require prison officials to perform HIV testing within 60 days of a prisoners' release. Finally, the bill includes a provision for counseling and medical care for those testing HIV+.

Only a few legislators have moved beyond the reactionary measures mentioned above to propose legislation geared to address the impact of HIV/AIDS in the prison system. The Congressional Black Caucus has sought to address the issue by designating funds for its HIV/AIDS prevention initiative for correctional facilities. On the state level, California Assemblyman Antonio Villaraigosa authored legislation in 1997 to create an effective compassionate release policy for prisoners with AIDS and other terminal illnesses. Unfortunately, these legislative measures are far from the norm.

Issues Facing the Millenium

There are at least five issues in the field of HIV/AIDS in prison in need of policy reforms as we approach the millennium. These issues include: strengthening education and prevention programs, improving access to medical care, expanding discharge planning, and cultivating the role of former prisoners living with HIV/AIDS.

Education and Prevention Programs

The HIV/AIDS education and prevention programs in prisons lack a comprehensive approach. Most experts believe a comprehensive program must include instructor and peer led sessions, counseling, testing, and partner notification. Experts have also suggested condom availability programs should operate in prisons. In many prison systems HIV education is limited to a video or booklet. Despite these efforts, prisoners continue to be misinformed about HIV transmission. A report released by the Louisiana Office of Public Health evaluating the HIV-related knowledge of male prisoners in Louisiana state prisons found some disturbing results. According to the report, over 90% of prisoners surveyed believed they could become HIV-infected by sharing forks, spoons, or toilets.

Despite recommendations from experts, peer education programs remain underutilized. A 1997 survey by the National Institute of Justice and the Centers for Disease Control found only 13% of state and federal prisons provided peer education programs. One component of education and prevention programs prison officials continue to stonewall is access to condoms. Several studies have documented HIV transmission within the prison system. The only controlled study of HIV transmission in prison was conducted among 2477 male prisoners in the Illinois Department of Corrections between 1988 and 1990. A total of 7 seroconversions were documented after a year of incarceration. Despite these findings only five jurisdictions make condoms available to prisoners. This number hasn't changed since 1992.

Medical Care

Receiving proper medical care is one of the biggest problems faced by prisoners living with HIV/AIDS. The use of combination therapy has resulted in a decline in AIDS deaths in prison. However, problems continue in the administration of these therapies and in monitoring treatments. Nonetheless, problems arise when prison doctors don't follow the U. S. Public Health Service Guidelines on when to begin or change treatment. In some cases prisoners are prescribed less than optimal combinations by inexperienced doctors or as a cost cutting measure. Once treatments are prescribed prisoners often face obstacles in receiving their medications. Delays in refills and medications being administered incorrectly can lead to the development of resistance.

Regular monitoring of treatment plans is also problematic. Some doctors provide combination therapy but only rely on CD4 testing. Appointments with infectious disease specialists outside the prison are sporadic or sometimes canceled. Women prisoners face an additional burden in trying to receive regular gynecological care.

Advocates have begun to notice a decline in the number of compassionate releases granted to prisoners dying with AIDS. In the New York Department of Corrections the percentage of deaths due to AIDS declined from 65% in 1995 to 27% in 1997. During that same period the number of compassionate releases declined from 63 in 1995 to 20 in 1997. In reviewing these figures advocates in New York have begun to believe prison officials are becoming more reluctant to grant releases.

Discharge Planning Makes a Difference

Most prisoners living with HIV/AIDS will return to the community. Discharge planning programs are essential to prisoners making their transition back into the community. Although most prison systems offer some type of discharge planning, it is usually limited to referrals for community services. The lack of a comprehensive discharge plan can be a blueprint for failure. Prisoners are often unable to locate treatment and other services in the community. Consequently, some of them eventually return to the prison system.

There are several model discharge planning programs operating throughout the nation including the Rhode Island Prison Release Program and New York's Criminal Justice Initiative. Both programs begin working with prisoners three to six months prior to their release date. As part of the process, the staff sets appointments and fills out applications for a variety of services including medical care, public benefits, case management, substance abuse treatment, and housing. An evaluation of Rhode Island's Prison Release Program showed a drop in recidivism as compared to a similar group of prisoners who weren't enrolled in the program.

The Role of Former Prisoners

One of our best weapons in the fight against HIV/AIDS in prison is prisoners and former prisoners living with HIV/AIDS. Unfortunately, the knowledge of both is underutilized. A generation of educators and activists has emerged from behind bars. When Johnny C. Smith, a Texas prisoner living with HIV, began publishing HIV+ Hope Behind Bars in 1997, he was following in the footsteps of the late Jimmy Magner who founded Prisoners With AIDS Rights Advocacy Group (PWA-RAG) while incarcerated in the FBOP. There's also a legacy of activism like the work of the late Joann Walker, who rallied attention to the plight of women prisoners living with HIV/AIDS at the Central California Women's Facility.

Advocacy doesn't stop once prisoners are released. Some former prisoners continue this work when they return to the community. They return to prison as volunteers providing a variety of services from HIV/AIDS education to discharge planning. A few have started their own organizations, like Cochise Robertson-El, founder of Blind Faith in Washington D.C. Others have joined the staff of AIDS service organizations like Kirk Myers of the AIDS Interfaith Network in Dallas, Texas. Still others work on similar issues in community based organizations, like Frenchie Laugier of the Federation for Research of Sexually Transmitted Diseases in New York City.

As we approach the millennium the crisis of HIV/AIDS in prisons continues. Little will change unless HIV/AIDS education programs are strengthened, medical care meets community standards and comprehensive discharge planning programs are expanded. The suicide of Mark Van Straten is a stark reminder of how far we have to go to improve conditions for prisoners with HIV/AIDS so that his death will not be in vain.

Jackie Walker is coordinator for the ACLU National Prison Project.