HIV & Civil Rights: A Report from the Frontlines of the HIV/AIDS Epidemic

by ACLU AIDS Project

Report, brochure, and poster available

Over the past two years, the ACLU AIDS Project interviewed over 40 community-based AIDS Service Organizations around the country to learn about the civil rights and civil liberties issues facing people living with HIV/AIDS. Almost every agency told the ACLU that the greatest problems facing their clients involve meeting basic needs – coping with poverty, hunger, illiteracy, inadequate medical care, lack of transportation, and homelessness. The report also addresses the many critical civil rights problems that people with HIV face.

The ACLU believes that individuals living with HIV/AIDS need to know their rights and need the resources to advocate for themselves when their rights are threatened. The organization plans to partner with community-based organizations (CBOs) on litigation and public education work, and develop tools that CBOs and people living with HIV/AIDS can use to make the most of the laws that already exist.

The greatest challenges that CBOs identified were:

Stigma and Fear of Disclosure

  • Many people avoid testing and treatment because they are terrified about the potential consequences of a breach of confidentiality.
  • Particularly in rural areas and in African American, Latino/a and Native American communities, people are afraid of abandonment by their families and rejection by their churches.
  • Violation of medical privacy was one of the most frequently reported civil liberties problems faced by people living with HIV/AIDS.

Privacy

  • All over the country, health care providers, pharmacists, law enforcement officials, government employers and schools are violating state and federal laws by disclosing HIV status without permission.

Names Reporting, Criminal Prosecutions and Mandatory Testing

  • Fear about unauthorized disclosure appears to be growing more acute now that most states require testing agencies to report the names of people who test positive or who seek treatment.

Discrimination

  • Employment: HIV/AIDS-based job discrimination is common (e.g., employees getting fired or demoted because of their HIV status; employers asking illegal questions on job applications, in interviews, and after making job offers).
  • Child Custody and Visitation: 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 Care: Doctors, dentists, skilled nursing and psychiatric facilities, and drug treatment centers refuse to provide services to HIV-positive patients.
  • Housing and Shelters: Housing discrimination based on HIV status is commonplace. Discrimination in homeless shelters is also common.

Medical Care in Rural Areas

  • In rural areas, even people who know that they are HIV-positive frequently receive no medical care.
  • Many patients are still being treated with AZT because doctors have never heard of triple combination therapy. Others are receiving no medication at all.
  • Treatment education is often nonexistent.
  • Prevention education is also lacking.

HIV in Prisons and Jails

  • Prisons and jails are depriving inmates of medication, skipping doses, and providing one standard set of medications for triple combination therapy, even for inmates with resistance to one or more of the three drugs.
  • The most widespread problem is disruption in medication upon arrival or departure.
  • Many inmates with HIV are subjected to longer prison terms based on discriminatory policies that exclude them from rehabilitative programs, including work release programs, because of the cost of medical care.

Immigration and Language Barriers

  • Documented immigrants have difficulty accessing housing services.
  • Many eligible immigrants do not receive food stamps or SSI because they are afraid the government will tell their families that they are HIV-positive.
  • Undocumented immigrants living with HIV find it difficult to obtain even basic health care.

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.
  • The ban on federal funding of needle exchange is a substantial problem.

Censoring Education and Prevention

  • The federal government is censoring/distorting prevention messages (e.g., abstinence-only until marriage).


Next Steps Identified by the ACLU are:

The ACLU emphasized the need for a tactical shift in fighting HIV/AIDS-related stigma by increasing the emphasis on education, advocacy, and enforcement over impact litigation and policy work aimed at creating new rules. The ACLU identified the following areas that seem the most pressing, both in terms of the number of people affected and the seriousness of the harms they face:

  • Discrimination in Residential Facilities
  • Deprivation of Parental Rights
  • Discrimination in Food Service and Health Care Jobs
  • Censorship
  • Violations of Privacy
  • Discrimination in Medical Care
  • Inadequate Care in Jails and Prisons