Tamara Lange, Staff Attorney, American Civil Liberties Union AIDS Project
(Adapted with permission from HIV & Civil Rights: A Report from the Frontlines of the HIV/AIDS Epidemic. ACLU, Nov. 2003.)

Over the past two years, the ACLU AIDS Project interviewed over 40 community-based AIDS service providers (CBOs) around the country to get a better picture of the civil rights and civil liberties issues facing people living with HIV/AIDS. The survey cast a wide net in terms of geography, type of service provided (medical, basic care, policy), and race, class, age, ethnicity, and particular needs of clients. The results reflect what direct service providers already know from day-to-day experience: there is a lot of work to be done.

Recent estimates suggest that as many as 280,000 people living with HIV in the United States do not know they are infected because they have not been tested, and that only a third of people who know they are infected are receiving care. CBOs reported that many people avoid testing and treatment because they are terrified about the potential consequences of a breach of confidentiality: social stigma, rejection by loved ones, being evicted from an apartment, losing a job, and suffering harassment or violence. Because of that fear, more people get infected, more people get sick, and more people die.

Particularly in rural areas and in African American, Latino/a, and Native American communities, people say that they are afraid of being abandoned by their families and rejected by their churches. In many rural areas, there is still widespread fear of casual contact and people still think of HIV as a "gay disease." Very few people in these areas are open about their HIV status and most are afraid to use their own names even with AIDS service providers. Even for people who are proactive in seeking medical care, the fear of social retribution and discrimination is so extreme that they are willing to travel from Alabama to Georgia to get tested or to drive 350 miles in Montana for treatment. And when their right to medical confidentiality is breached and their HIV-positive status is made known to others (whether inadvertently or otherwise), their lives can and do unravel, forcing them to find new jobs, new schools, and new homes.

Discrimination adds to the daily struggles faced by the growing number of people living with HIV/AIDS in the United States. 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. People who take time off for medical care often lose their jobs, either because of absences or because they are forced to disclose their HIV status and are then fired. Several providers reported that clients who were HIV-positive were prohibited from visiting their children, lost custody of their children, or were prohibited from providing foster care or adopting children.

Medical and social services play a critical role in the daily lives of many HIV-positive people, but because of ignorance and discrimination this lifeline is often dangerously unreliable. All over the country, from Alabama to California, doctors, dentists, skilled nursing and psychiatric facilities, and drug treatment centers refuse to provide services to HIV-positive patients. Discrimination in residential nursing, drug treatment, and psychiatric facilities leaves many people with HIV/AIDS without any way of obtaining adequate care. Many facilities blatantly refuse to accept patients who are HIV-positive; others have unspoken rules. And in rural areas especially, even people who know that they are HIV-positive frequently receive no medical care. Many people in small communities and on reservations refuse to access services close to home because of fear of discovery.

These are, of course, just a few of the contexts in which AIDS-related stigma and discrimination contribute to the epidemic. In combating stigma and discrimination and other challenges in the fight against HIV/AIDS, the ACLU AIDS Project will focus significant resources on creating tools that CBOs and people living with HIV/AIDS can use to make the most of good laws that already exist. We also encourage anyone interested in working with the ACLU AIDS Project on a particular issue, or who has heard about a problem that we might be able to address, to please let us know. We look forward to an ongoing collaboration.

For more information, please visit www.aclu.org/HIVAIDS.