Locked Up and Locked Out: Advocates Join Prisoners in Fight Against Double Epidemic of HIV and Hepatitis C Behind Bars in the United States

By Suzy Subways

NOVEMBER 2006 • Issue 1

An estimated one in four people living with HIV in the United States spends time behind bars each year. Depending on the region, up to a third of incarcerated people may also be living with hepatitis C.

Given these realities, it should be clear that a well-organized effort to address these overlapping diseases behind bars is necessary, and that prisoner health and public health cannot be separated.

Sadly, this sensible conclusion has not been reached by many policymakers or purseholders. Prisoners with HIV and hepatitis C, along with their outside advocates, are left without resources or much organizational support, battling mazes of bureaucracy that vary between cities and states, sharing ideas over the internet and snail mail, and struggling to keep up with the mounting need for advocacy.

As we prepare to enter 2007, there are a handful of efforts – including bills in Congress – that take on the challenge of HIV and hepatitis C in prison. With more eyes finally open to the problems inside prisons and jails, there may be increased opportunities to link and amplify these efforts.

Many activists point out the links between War on Drugs policy and the rate of HIV in the Black community. Between 1982 and 1996, as sentences for minor drug crimes got longer, the percentage of prisoners who were Black increased to well over half. Meanwhile, the National Institute of Justice reported in 2005 that 1.9% of male prisoners and 2.8% of female prisoners have HIV.

Illinois passed the first law directed at these linked issues – the African-American HIV/AIDS Response Act – last year. It will expand voluntary counseling and testing in state and county jails, create new leadership positions in state government to coordinate efforts against HIV in the Black community, and research the links between incarceration and HIV. It will even set up re-entry services, says Reverend Doris Green of the AIDS Foundation of Chicago, who has advocated for prisoners for 25 years. There’s one catch, though, she says – the law doesn’t have any funding yet. “We worked very hard for this bill, and we’re going to work twice as hard to get it funded,” she says.

Condoms Save Lives – but what about the lives of the incarcerated?

The Illinois bill stopped short of authorizing one public health measure that Rev. Green says is urgently needed inside: condoms. In April, the Centers for Disease Control (CDC) released data from interviews with HIV positive male Georgia prisoners, revealing that the vast majority of sex in the prison is consensual. Thirty percent of those who had consensual sex tried to protect themselves and their partners – mostly by crafting makeshift barriers out of latex gloves or saran wrap.

But prisons only provide condoms in Vermont, Mississippi, Philadelphia, Washington, DC, Los Angeles, San Francisco and New York City. Most of these programs are fairly restricted. For example, the LA program is only allowed to serve a small unit of out gay and transgender inmates. Philadelphia’s policy purports to offer universal access, but as one former prisoner told ACT UP members who interviewed him, the majority of corrections officers would “order you to go to the hole or confinement…once they come in your cell and find condoms. Then they know you are doing something [illegal].”

A broad coalition of AIDS organizations in Southern California led a powerful effort statewide, winning the support of 70% of the state’s voters and both legislative houses to pass a law allowing distribution in all California prisons – but Arnold Schwartzenegger terminated it with a veto in late September. Mary Sylla of the Center for Health Justice says the coalition may decide to push for the bill’s re-introduction next year, and/or approach facilities one by one to start condom programs – a step that would be needed even if the law passed. ACT UP activists in Philadelphia and Austin, Texas, working with CHAMP’s Prevention Justice Partnership program, have also initiated condom-in-prison advocacy campaigns in the past year.

Meanwhile, in the federal House of Representatives, Representative Barbara Lee has introduced a bill to allow community organizations to provide condoms — along with voluntary counseling, testing and treatment of all STDs, including hepatitis C — in federal prisons. Her announcement came after fellow California Congress member Maxine Waters announced a different bill at the global AIDS conference in Toronto in August. The Waters bill would require mandatory testing for all new and soon-to-be released federal prisoners. Under pressure from the HIV community, Waters later added an opt-out provision, but the bill does not specifically require that prisoners be informed that they have the right to opt out of the test.

The ACLU’s National Prison Project Coordinator for HIV and Hepatitis, Jackie Walker, notes that “one good aspect [of the Waters bill] is that it would mandate comprehensive treatment.” Even if prisoners are tested for hepatitis C, it is common to neglect to tell them that they indeed were tested, or give them test results. While Walker has gotten letters from some prisoners who are getting hepatitis C treatment, it is far from the norm. Facilities may also impose “residency requirements” that allow the costly hepatitis C treatment to be denied to people who have not been serving lengthy sentences.

States of Neglect

Last year, the New York Times ran an expose of Prison Health Services (PHS), the biggest corporation in the country’s $2 billion-a-year for-profit inmate medical-provider industry. The state had faulted PHS in 23 prisoner deaths within a decade. Dr. Bobby Cohen, a federal court-appointed prison health monitor, told Democracy Now reporters, “There is no room for for-profit health care in prisons…. There’s a fixed amount of money, and whatever they don’t spend, they keep.”

New York state activists won the removal of a 15-month residency requirement for hepatitis C treatment, but have lost ground in a fight to get direct Department of Health oversight of prison healthcare. “The Department of Correctional Services (DOCS) self-monitors and self-governs,” says the Alliance for Inmates With AIDS’s Romeo Sanchez, a formerly incarcerated advocate living with hepatitis C. And the state’s 10,000 Spanish-language-dominant prisoners “must turn to their peers who are bilingual for translation. Their confidentiality is breached, omissions of information occur and the potential for misdiagnosis is constant.”

In Alabama, a Southern Center for Human Rights lawsuit settled in June improved healthcare in the state’s segregated facility for those with HIV. Ironically, one improvement was to ditch the disastrous for-profit provider the state had been paying, NaphCare, and replace it with PHS, raising the standard of Alabama’s prison health care, apparently, to a level tolerated by other states but that may be far from adequate.

Cutting to the Root of Bad Prison Policies

“Somerville wants to add up to 600 jail beds, but half the state detox beds have been cut,” says Susan Mortimer of the Massachusetts Statewide Harm Reduction Coalition, making the connection between prison spending and the lack of services in the community that could keep people out of the lockups. The coalition fights for needle exchange, drug treatment, against racist medical neglect, and for the human rights of queer and transgender prisoners, in addition to organizing grassroots support to demand a moratorium on prison expansion. “We’re working hard to make all the connections,” she says.

Prisons are a huge expense, and states are being forced to react. Demands for humane treatment can sometimes force authorities to change policies at the root of the problem. Alabama’s plan to counter its now-soaring prison health costs, according to the Athens, Alabama, News Courier, “focuses on reversing inmate growth. The system is depending on sentencing reform and community centers to keep offenders out of prisons.”

These openings bring opportunities for AIDS activists to work closely with anti-prison and sentencing activists (Critical Resistance is one national group). The AIDS community has always been good at linking issues and bringing people together. But even the most caring AIDS service workers find that their funding sources dictate who they can work with, what services they can provide. So AIDS Treatment News offers low cost ideas for ASOs: “Host a former prisoner support group; invite your community legal aid organization to do a legal clinic on getting benefits with a record; build connections with job training programs…reach into prisons through letter writing, informational sessions and official visitor programs.”

Anti-prison activists have added energy to ongoing local efforts for standard-of-care treatment in prisons. But they should be ready for a sustained fight. Somerville, MA, activist Susan Mortimer describes an often-frustrating process: “You get any information and paperwork the prisoner can give you, then you start with the first person on the corrections ladder, going up and up – then you try to get the prisoner’s rep in the state house to apply pressure,” she says. “A friend of mine, Tony, died in prison recently. He had paraplegia and HIV. Medical neglect created a bedsore and infection. The sore on his lower back was huge, and deep enough to expose bone. The media covered it, but even when the issues get publicized, correctional healthcare providers don’t do anything about it.”

Jackie Walker lists some of the prisoner complaints she gets from all over the country: “Their meds are not being administered correctly, they’re not receiving their meds, they think an opportunistic infection may be showing up but they’re not getting monitored for it, they’re not getting regular CD4 and viral load tests.”

In some places, activists have carved out a functional grievance process, often by figuring out if there is a person in the chain of command who will respond. In Philadelphia, John Bell, an instructor at Philadelphia FIGHT and a former prisoner living with HIV, takes individual complaints straight to the current Philadelphia prison commissioner. “The community is invited to give input, and it’s listened to,” Bell says.

To connect as a prison health activist, download a June 30, 2006, directory [NO LONGER AVAILABLE – try the Prison Activist Resource Center directory instead] put together by the AIDS Treatment Activists Coalition, or get in touch with CHAMP for ideas about becoming involved in the fight.

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Filed under African Americans, Chicago, harm reduction, hepatitis, New York City, Philadelphia, prison, Solidarity Project, Southern United States, treatment access, Uncategorized

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