A Report from the Frontline of the HIV/AIDS Epidemic

by Tamara Lange

Over the past year, the ACLU AIDS Project interviewed approximately 40 community-based AIDS service providers around the country to get a better picture of the civil rights and civil liberties issues facing people living with HIV and AIDS. That picture is even uglier than we had anticipated. We have our work cut out for us.

What follows is a preview of the survey results, which we will use to shape our litigation, policy, and public education efforts. We'll also share the survey with policymakers and other organizations working for the rights of people living with HIV and AIDS.

Almost every agency told us that the biggest problem facing their clients is basic needs -- poverty, hunger, illiteracy, adequate medical care, lack of transportation, and housing. Discrimination and civil rights violations discussed below only add to the daily struggles faced by a growing population of HIV-positive people who are predominantly poor and disproportionately African American or Latino. Because local agencies are best equipped to help their clients with basic needs and because the focus of our work is civil rights and civil liberties, our report targets areas in which people living with HIV and AIDS face illegal violations of their rights.

Privacy and Fear of Social Stigma

Nearly every one of the providers with whom we spoke reported serious violations of medical privacy. In New Mexico, a patient first learned that he was HIV-positive from a receptionist in front of a waiting room full of people. Police in St. Louis found a young man's HIV medication when they searched his car and disclosed his HIV status to his father, saying he had a right to know. The New York City Department of Health disclosed a person's HIV status to his employer. A teacher in Florida informed an entire class that a particular student was HIV positive. A receptionist at a nursing home in Texas told a woman that the man holding her baby might give it AIDS. These incidents are likely the tip of the iceberg, for even people who reported egregious breaches of confidentiality were typically too afraid to confront the problem if it meant disclosing their HIV status to more people. Nevertheless, such breaches of confidentiality can and do unravel HIV-positive people's lives. After their HIV status was disclosed, several people were literally driven out of Paris, Texas with hate mail and vandalism of their homes.

The social stigma associated with HIV means that people avoid getting tested - and avoid seeking treatment when they test positive - because they are afraid their privacy will be violated. Especially in rural areas and in African American, Latino, and Native American communities, people are afraid of being abandoned by their families and rejected by their churches. Quite a few of the service providers surveyed explained that fear of being cast out is so extreme that people go to extraordinary measures to protect their privacy, like traveling from Alabama to Georgia to get tested or driving 350 miles in Montana to get treatment. As more and more states require testing agencies to report the names of people who test positive or seek treatment, this apprehension has increased, and it now presents an enormous barrier to keeping HIV-positive people alive and to keeping others from being infected. In New York, labs are now reporting the names of doctors who request HIV-related lab work for their patients, and the state is prosecuting those doctors who don't report when HIV-positive patients seek treatment.

Discrimination

Despite some advances, discrimination against people living with HIV is still pervasive and affects virtually every aspect of life from employment to housing to access to basic medical care.

Job discrimination is still a problem. Most service providers had stories of HIV/AIDS-based job discrimination. An AIDS organization in Tallahassee receives approximately ten complaints a year from people who say they were fired because of HIV status. Another provider in Texas typically receives at least one call every week from someone who was fired or demoted because of HIV status. Employers in Detroit and New York ask illegal questions, including ""what medications are you taking,"" and ""have you been on disability"" on job applications, in interviews, and after making job offers. According to local agencies, in Dallas and Fort Worth it is ""a given"" that disclosure of status means a decision not to hire, particularly in the restaurant business. One Texas employer required an HIV-positive employee to use a different bathroom, eat in a separate location, and wear long-sleeved clothing in the summer.

Discrimination is pervasive in medical and social services. Medical and social services play a critical role in the daily lives of many HIV-positive people, but this lifeline is often dangerously unreliable because of ignorance and discrimination. All over the country, doctors, dentists, skilled nursing and psychiatric facilities, and drug treatment centers refuse to provide services to HIV-positive patients. One hospital in rural Texas has tried on several occasions to send HIV-positive patients seeking emergency care to the local AIDS service organization, saying ""we've got one of yours."" In the most egregious case, a patient who was sent to the hospital because of vomiting and diarrhea was found lying in a hospital bed with nothing but a cup of water on the table. Staff from an AIDS service organization delivered medication to him and asked that he be given an IV. They returned to find the man in the same neglected state. By the time he was transferred to another hospital, it was too late, and he died there. Service providers also told stories about nursing homes and psychiatric or drug centers from Arizona to Los Angeles that flatly refuse to accept HIV-positive clients. Rural service providers in Texas hear about cases from Oklahoma where people who test positive are sent to a gay nurse practitioner with no resources to provide HIV care.

People living with HIV and AIDS are particularly vulnerable to housing discrimination. Because a disproportionate number of people living with HIV/AIDS are poor, access to housing is a critical problem that is compounded by discrimination. AIDS organizations in Missouri, Arkansas, Florida, and Alabama said they have seen numerous evictions based purely on HIV status. In Dallas, certain apartment complexes associated with social service programs refuse to allow anyone with HIV or any other disability into their programs. Many landlords will not accept checks from social service programs, making it impossible for HIV-positive tenants receiving government subsidies to rent from them. Neighborhood associations from Alabama to New Mexico actively oppose issuance of city and county permits for any new housing facility for people living with AIDS.

HIV in Prisons and Jails

Failing to adhere to a strict schedule when taking HIV medication can make the virus resistant to the medication, so depriving inmates of medication is a matter of life and death. All over the country we heard stories about prisons and jails depriving inmates of medication, skipping doses, or providing one standard set of medications for triple-combination therapy, even for inmates with resistance to one or more of those three drugs.

Nearly everywhere we went people told us that HIV-positive prisoners are released from jail without the medication they need to tide them over until they can obtain follow-up care. In New York, it takes 45 days to qualify for Medicaid; in Dallas, it takes 60 days to get an appointment at the county hospital.

A county jail in Texas reportedly refused to provide medication to one inmate for over two months, asserting that the local AIDS services organization was responsible for getting him medication. In Santa Fe and Gallup, people with HIV who have been arrested and held over the weekend have begged for their medications to no avail because the jail does not see non-adherence to an HIV-medication regimen as a medical emergency. Several Texas prisons switch inmates to cheaper medications despite the danger that the virus will develop resistance to the medications that keep them alive. AIDS organizations in Los Angeles and Michigan also reported that prisoners have a hard time getting medication and are subjected to dangerous interruptions in medication.

Needle Exchange

There are very few needle exchange programs, and hence very little education about or access to clean needles as a way to prevent the spread of HIV. Those programs that do exist are in imminent danger of having their funding pulled. New Mexico was the only state where providers talked about the availability of successful needle exchange programs. Even in the traditionally conservative city of Roswell, police have been open to needle exchange. In contrast, providers in Detroit and Missoula identified the ban on federal funding of needle exchange as a substantial problem. Of the groups interviewed, only one provider had needles and works-cleaning kits in public view with instructions clearly posted, and they are dismantling their program because of funding problems.