The ACLU AIDS Project: Decades On, Still Separate and Unequal

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Unfounded fears echo throughout policy, health care, education -- pretty much everywhere.

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Stigma associated with HIV is still far from a thing of the past. Legal cases against employers, health care providers, prison systems, and even the TSA, continue to keep attorneys busy with the American Civil Liberties Union AIDS project.

A decision is now pending in the ACLU's case against the state of Alabama. Just before Thanksgiving, a federal judge in the state delayed his ruling on whether Alabama will continue to be one of only two states in the nation to segregate HIV-positive prisoners.

To ameliorate its concern about the spread of HIV behind bars, the Alabama Corrections Department requires inmates who test positive for HIV -- every new prisoner is tested at intake -- to live in separate single-sex dormitories.

30 years into the HIV epidemic, 1 in 3 Americans gave wrong answers about three ways in which HIV is not transmitted -- sharing a drinking glass, touching a toilet seat, and swimming in a pool.

Prisoners living with HIV are required to wear white plastic armbands identifying them as HIV-positive. They are not allowed to hold jobs around food, and can't participate in the work-release programs with fast-food restaurants that employ HIV-negative inmates. They were not allowed to attend prisonwide church services until 2009.

Alabama and South Carolina are the only remaining states that segregate HIV-positive prisoners. Most states changed their isolation policies as knowledge about HIV prevention and treatment increased. A federal court upheld Alabama's policy in 1995, the year that effective medical treatment first became available to manage HIV infection. The Justice Department in 2010 notified South Carolina it was investigating and might sue to end the state's HIV segregation policy.

In September, the ACLU brought the class action accusing the state of Alabama of violating the Americans with Disabilities Act, which requires accommodation of people with disabilities -- not segregation or the stigmata of white plastic armbands. "We had the testimony of dozens of witnesses speaking about the practical harms of that policy," said Rose Saxe, a senior staff attorney with the ACLU AIDS project. She called it "incredibly stigmatizing."

The ACLU's more typical cases involve HIV-positive people excluded from jobs in which they pose no threat of transmission, or excluded from medical or dental services. "We worked with a nurses aide," said Saxe, "who was suspended after her supervisor found out she had HIV. She wasn't helping with surgery; she was helping people get dressed."

For those on the receiving side of medical services, Saxe said, "We see clients and members of the public being discriminated against whether going to a doctor or an eating disorder clinic, being told 'We don't work with people with HIV' or 'You can't stay in our facility; you need a special facility, and your insurance doesn't cover it.'"

When HIV-positive employees have revealed their HIV status, some employers have overstepped their legal bounds by demanding intimate medical information that goes far beyond their need or right to know. Said Saxe, "We are contacted by people who have to really justify keeping their jobs by answering invasive questions about their medical history or their viral load, when what they're doing doesn't present any risk. We were seeing demands for a person's viral load when their HIV had nothing to do with their job." She recalled the case of a man who applied to be a TSA baggage handler. "They asked his T-cell count," said Saxe. "They said he wasn't qualified because he could get sick working in an airport."

Saxe said most discrimination "is about a lack of understanding about transmission risk." She noted that the Kaiser Family Foundation's 2011 survey of Americans' attitudes toward HIV found that, thirty years into the HIV epidemic, 1 in 3 Americans gave wrong answers about three ways in which HIV is not transmitted -- sharing a drinking glass, touching a toilet seat, and swimming in a pool with someone who is HIV-positive.

Not only that, but 45 percent of Americans still report being uncomfortable with the idea of having their food prepared by someone who is HIV-positive, 36 percent with the idea of having an HIV-positive roommate, 29 percent with having their child in a classroom with an HIV-positive teacher, and 18 percent working with someone who has HIV.

The survey suggested that knowing someone with HIV, and knowing how HIV is and isn't transmitted, correlate to greatly reduced discomfort and the stigma and discrimination that results from it.

"We've come a tremendous way," said Saxe, "but it's sobering still to have to struggle with these kinds of scenarios."

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The author of Victory Deferred, John-Manuel Andriote has specialized in HIV/AIDS reporting since 1986. His research materials, correspondence, and recorded interviews are part of a special collection curated by the Smithsonian.

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