The story of Mary Robinson’s life of crime starts like this: She was molested as a child, discovered the anesthetic powers of a heroin needle as a teen and has spent the years after that chasing chaos. Along the way, she picked up two souvenirs that shaped the course of her adult life – a long and diversified criminal record, and a pair of chronic infections that have, for the past 20 years, worked together to demolish her immune system.
HIV and Hepatitis C operate like a sort of epidemiological tag team: Because they’re transmitted in the same ways (most commonly, through unprotected sex and shared needles), they tend to travel in the same circles. And in New York, those circles find their center in the state prison system. The Department of Health estimates that 12 percent of women and 6 percent of men in New York prisons are HIV-positive, and that more than 8,400 are infected with hepatitis C. That makes the incidence of HIV/AIDS in the prison population 42 times higher, and of hepatitis C six times higher, than in the general population – meaning that the prison system is the largest provider of care for these diseases in the entire state.

Viewed in a glass-half-full sort of way, inmate infection rates present a tremendous opportunity to improve the state’s public health. Working with a literally captive audience, medical providers have a chance to identify, educate and treat people who can be nearly impossible to reach on the street. Since 97 percent of those people will eventually go home – most of them to the same small number of neighborhoods – giving them the best possible healthcare while they’re locked up can boost the wellbeing of whole communities. Missing that opportunity, or failing to help connect inmates with medical care on the outside, increases the odds they’ll end up in an emergency room or a morgue (but possibly pass on the virus first).

Yet providing health care to inmates is an inherently complicated task, and one that can be difficult to reconcile with prisons’ primary mandate of maintaining security. Over the past two-and-a-half decades, as the growth of HIV, hepatitis C and the nation’s prison population have collided, advocates and corrections officials have waged an increasingly furious war over how to do it best. Last month, the advocates won a major battle: Gov. Paterson signed a law (S.3842/A.903) aimed at bringing new levels of oversight to HIV and hepatitis C care in prisons.

Activists on the inside

Mary Robinson began her prison career in 1986, five years after HIV appeared in the U.S., three years after she had been given her own AIDS diagnosis, and just as the disease was at the height of its death march through New York prisons. “There was no treatment,” recalls Robinson, now 47 and living in the Bronx. “Women just wasted away in front of you.” They fell to voracious skin cancers or came down with low-grade fevers that raged into sudden pneumonia, disappeared into prison hospital wards and never came back.

AIDS phobia was just beginning to spread across the country – Over the next two years, 13-year-old Ryan White would be banned from his Indiana school and 10-year-old Ricky Ray’s house would be burned in Florida. Inside prisons, where inmates were forced into constant, intimate contact, fear exploded into panic. “I was like a pariah,” says Robinson: “The AIDS girl.” Women on her cellblock threw cartons of sour milk at her in the cafeteria. They refused to use toilets or showers after her, banned her from sitting on furniture and spat in her face when she passed them in hallways. By the time she was being transferred out of the county jail system and into state prison, she was ready to give up. “I just couldn’t take it anymore,” she says. “I was going to kill myself.”

But that’s where Robinson’s story – and the story of infectious disease care in New York prisons – changes. She was transferred to the state’s Bedford Hills Correctional Facility, which, at the time, was also the home of two of the country’s most infamous prisoners. Kathy Boudin and Judith Clark had been members of the 1960s radical group The Weather Underground, sent to prison after a botched robbery that killed three people, a guard named Peter Paige and police officers Waverly Brown and Edward O’Grady. By the time Mary Robinson met them, the pair had worked to set up literacy and parenting support programs inside the prison.

When AIDS hit, Boudin and Clark organized a support group called AIDS Counseling and Education (ACE), which grew into a powerful inmate-run advocacy organization. At a time when many inmates knew nothing about how the virus spread, ACE developed HIV workshops for women coming into the system. They wrote to infectious disease specialists, who came in to educate inmates and prison medical staff. They volunteered as nurses’ aides in the prison’s hospital ward, giving sponge baths, emptying bedpans and keeping women company while they waited to die. For Mary Robinson, it was a chance to make something positive out of the disasters she had created in her life: “We found so much strength in the tragedy of death,” she says. “We would cry and become that much stronger to fight.”

ACE brought public pressure on a prison system it believed was criminally slow to respond to the crisis inside its walls. In 1990, the New York Legal Aid Society filed a class action lawsuit against the state, charging that the Department of Correctional Services (DOCS) let inmates with HIV and AIDS die unnecessary – and unnecessarily painful – deaths. DOCS fought the suit for 17 years before reaching a settlement that forced it to train its medical providers in HIV care, and to ensure that inmates are sent to infectious disease specialists when the treatment they’re getting in prison isn’t working.

As doctors became more aware of the symbiotic relationship between HIV and hepatitis, infectious disease advocacy broadened: Over the past two decades, prisoners’ rights lawyers have fought and won at least five major lawsuits forcing the New York prison system to improve its treatment for inmates with hepatitis C.

Improving inmate care

All parties agree that infectious disease care in prisons has improved enormously, but advocates say that the system is still a long way from providing care that’s up to community standards. Earlier this year, the Correctional Association of New York (CANY), a watchdog group mandated by the state legislature to inspect and report on conditions in prison, released the results of a three-year investigation into prison medical care. After digging through records and speaking to providers and inmates at 17 of the state’s correctional facilities, CANY researchers found wide discrepancies in inmates’ access to care from prison to prison. “Too often, the care an inmate gets depends on where they happen to be sent, rather than their actual medical needs,” says Jack Beck, the main author of the report.

According to the CANY investigation, the best of the state’s prisons maintain a ratio of one doctor to every 300-400 inmates. Others run closer to one doctor per 600 inmates. Because prison medical providers tend to be paid below market rate, many facilities face constant staff shortages – one prison was missing 40 percent of its physicians, half of its physician assistants and nearly 30 percent of its nurses. Unsurprisingly, at prisons with the highest vacancy rates, inmates reported the longest waits to get appointments and the shortest appointments once they were finally seen.

When an inmate has HIV, hepatitis C or both, the gaps, slipups and discrepancies can be devastating. After 10 years of freedom, Mary Robinson got high and tried to rob a bank in 2006. She landed back in the system, where she got to see firsthand how infectious disease care had gotten better – and also how it hadn’t. Before Robinson was arrested, she was on a cocktail of HIV medication that had successfully suppressed her virus for several years. When she went into the Rikers Island jail, there was a delay in getting her medical records, and then the jail’s pharmacy didn’t have her prescriptions in stock. She says she went untreated for six days – long enough for her virus to develop a resistance to the therapy she’d been on. She had to start a new round of drugs, which brought weeks of vomiting, diarrhea, headaches and lethargy.

Prison also gave her a chance to get clean and sober and to reevaluate. When she was released, Robinson started working as an advocate for inmates with HIV and hepatitis C. She counts the new Department of Health oversight law as her first major victory – as one contributor to the efforts led by the Correctional Association and joined by the Osborne Association and other groups.

The law requires the health department to go into jails and prisons once a year, evaluating every policy and practice that relates to care and treatment of the two infectious diseases. Advocates say it will bring accountability into a process that for too long has been shielded from public view by the corrections department. “Until now, DOCS has been the only provider of medical care in New York that is allowed to operate without outside oversight,” says state Senator Tom Duane of Manhattan, who sponsored the law.

Spokespeople for DOCS and the Department of Health say they don’t yet know what implementation of the new law will look like, but both departments lobbied against the bill before it passed. Erik Kriss, the main spokesperson for DOCS, argues that the new system will actually direct money into bureaucracy and away from an inmate care system that, he says, is already working well. “We have always worked with the Department of Health to establish high standards of care,” says Kriss. “The best way I’ve heard it put is this: Have you ever had a co-worker who became your boss?”

Advocates say that’s an attitude that is going to have to change. “This bill is part of a movement to bring a great deal more oversight into the prison system,” says Jack Beck of the Correctional Association. “Prison walls are meant to keep people inside. Too often, they’ve been used to keep public scrutiny out.”

– Abigail Kramer