Looking back: Advocacy Community Witnesses Decades of Effort Come to Fruition

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As knowledge about AIDS emerged in the early 1980s, advocates quickly identified a serious crisis-within-a-crisis inside New York’s prison system. The first confirmed AIDS-related death in a New York prison took place in November 1981, and by the height of the epidemic, approximately 9,500 incarcerated individuals were infected with HIV. In the early 1990s, two-thirds of all incarcerated individual deaths in New York were AIDS-related.

Like other serious health problems, the AIDS crisis was magnified inside the prison system. Incarcerated people often already receiving inadequate medical care were increasingly stigmatized once diagnosed with HIV, and, by virtue of their confinement, had little opportunity to fend for themselves. Using a variety of strategies and channels, the advocacy community organized to address this growing public health problem.

In 1988, the CA’s AIDS in Prison Project (later absorbed by the Prison Visiting Project) published AIDS in Prison: A Crisis in New York State Corrections, one of the earliest comprehensive reports on the issue. The following year, the AIDS Advisory Council an ad hoc committee on AIDS and correctional facilities formed by the AIDS Institute of the New York State Department of Health published its own report. Soon after, the CA organized a national conference in San Francisco where experts in the fields of AIDS and criminal justice gathered to discuss HIV care in prisons.

While the resulting public attention brought about some notable improvements in DOCS policy and practice, by the mid 1990s the prison AIDS epidemic was worsening.

“Thousands of HIV-infected incarcerated individuals were entering prison each year and hundreds of incarcerated-patients were dying because no effective treatment was available,” said Jack Beck, the Director of the CA’s Prison Visiting Project. As a Supervising Attorney for the Legal Aid Society, Beck helped to file a class action lawsuit on behalf of all HIV-infected incarcerated individuals in the system. “From 1991 to 1995, more than 200 AIDS-related prison deaths occurred each year. People were dying and there was little we could do for them but to offer our support and promise to advocate for better care for HIV-infected incarcerated individuals who would follow them into the prisons.”

The need for transparency and accountability was clear, and advocates began calling for oversight by the Department of Health (DOH). In 2001, working with advocates, Assemblymember Richard Gottfried, Chair of the Assembly Committee on Health, introduced legislation calling for DOH oversight of HIV care in the state’s prisons and jails. Standing alongside Gottfried in the State Senate was Tom Duane, a passionate advocate for marginalized people living with HIV and AIDS. Earlier this year, Duane became Chair of the Senate Committee on Health, and was instrumental in securing the bill’s passage this past July.

In recent years, HIV rates have decreased significantly in both the community and in prisons, and AIDS-related deaths have dropped to less than 20 incarcerated individuals per year, largely due to more effective treatment and enhanced education and outreach efforts. Nonetheless, incarcerated individuals still account for a disproportionate rate of HIV infections. This disparity is especially pronounced for incarcerated women, whose HIV infection rate is twice that of male incarcerated individuals, and a striking 80 times higher than non-incarcerated women. Similarly, the more recent hepatitis C epidemic which can also lead to chronic or fatal health conditions without appropriate treatment affects the prison population at dramatically higher rates.

With early detection, proper treatment and quality care, people can effectively manage HIV and hepatitis C and lead healthy lives. Incarceration should never deny a person this basic human right. As an independent, external monitor of hepatitis C and HIV care in prisons and jails, the Department of Health can now ensure that incarcerated people suffering from chronic illnesses are not subject to a “second sentence.”

While the new law represents significant progress, the advocacy community’s work is far from done. The CA will monitor the implementation of the legislation to ensure that it fills its potential, and will work towards securing DOH oversight of all medical care in New York’s prisons and jails. Ideally, all prison healthcare not just infectious disease care should be held to the same standards as the medical services in hospitals, clinics and doctors’ offices in the community.