Stigma, Fear of Health System Continue to Plague People Living with HIV/AIDS and Those Yet to be Diagnosed

AIDS Coordinating Committee Outlines Recommendations to New Administration

Every nine-and-a-half minutes, someone in the United States is infected with HIV, according to a presentation called “HIV and the Rule of Law: A Legal Roadmap for a New Administration” given at the American Bar Association’s Midyear Meeting in Boston. Ravinia Hayes-Cosier, director of government relations and public policy of the National Minority AIDS Council in Washington, D.C., one of three presenters updating participants on the current state of HIV/AIDS nationwide, provided the sobering statistic.

“Panelist Ravinia Hayes-Cozier explores health care, political and personal challenges of AIDS/HIV.”

Women of color are more likely to be diagnosed with HIV—1 in 30 as opposed to 1 in 588—according to Hayes-Cosier. Much of the new information presented in Boston centered on women and the particular challenges that they face when diagnosed with HIV or when living with AIDS: including inadequate access to comprehensive health care, solo parent responsibilities, and low-wage jobs that make it difficult to obtain time off to treat their illness or symptoms.

The program was one of several that the AIDS Coordinating Committee is presenting as it leads up to 18th International Conference on AIDS scheduled for Vienna, Austria, in July 2010. The AIDS Coordinating Committee is working with the International AIDS Society to develop a specialized conference track devoted to Policy, Law, Human Rights and Political Science for presentations at the Vienna conference.

Women in prison with HIV/AIDS fare far worse. There are no consistent regulations for routine health care at the federal level, according to Hayes-Cozier. Women inmates’ medical concerns are often dismissed as exaggerated. Sexual abuse occurs, and the spread of other communicable diseases—such as tuberculosis and hepatitis B and C— is much more likely. She cited the Stop AIDS in Prison Act of 2007 (HR 1943) introduced by Rep. Maxine Waters, D-Calif., as a positive effort toward providing an effective HIV/AIDS program in federal prisons.

More Cases than Originally Believed

The Centers for Disease Control and Prevention recently increased its estimate of people living with HIV (PLWH) in the United States to nearly 1.2 million people—30 percent more than originally thought. In addition, about 200,000 of those have not been diagnosed. Thus the challenge is to encourage testing among people who may be infected but unaware of their status, and also to provide adequate pre- and post-test counseling, according to Denise McWilliams, director of policy and legal affairs at the AIDS Action Committee of Massachusetts.

Yet nearly 20 years after the first AIDS cases were identified in the United States (but the name AIDS had not yet been applied to the disease) there are still great disincentives to being tested. Stigmas relating to sexual orientation or behavior, use of drugs or immigrant status stand in the way of testing. In addition, some people for their own reasons, “simply don’t want to know their status or are afraid to go to a doctor for fear of getting tested without their knowledge,” said McWilliams.

Dear Mr. Obama

Catherine Hanssens, founder and executive director of the Center for HIV Law and Policy in New York City, presented a “people living with HIV/AIDS” to-do list for the Obama Administration’s first 100 days. Hanssens called the list “eminently doable”, and advocated that HIV policy should be understood as part of a broader philosophical fight for basic human rights.

The list forwarded to the Obama transition team included

• a recommendation to lift the ban on HIV-positive foreign visitors and immigrants because HIV is not communicable by casual contact
• a request that the federal government deny unwarranted exclusion of people with HIV from participating in occupational training and professional licensing programs, such as home health aides or massage therapists
• a call for the elimination of all HIV-specific exclusions from federal employment and program participation (Job Corps, Peace Corps, for example)
• comprehensive HIV prevention programming in correctional facilities, as well as the provision of condoms within prisons
• a call for the return to former CDC testing guidelines that reinforce the importance of documented and informed consent and pre- and post-test prevention counseling to ensure that people know and understand they are being tested and that counseling is provided.

What can lawyers do?

The session closed with the question, what can lawyers do to support people living with HIV/AIDS and the policies that affect them?

Panelists encouraged participants to support age and gender appropriate health education within schools, to support access for legal services for people with HIV/AIDS, to support written informed consent for people being tested and most importantly, to strongly support a comprehensive national strategy on HIV/AIDS in the United States.

The mid-year meeting program will be available as a podcast. For more information on The Road to Vienna, visit AIDS Coordinating Committee.