Coloring in the gaps in HIV/AIDS policy

By Michelle Chen Jul 14, 2009

What does the HIV epidemic in America look like today? A coalition of advocacy groups has painted a picture of the crisis that no one wants to see–and one that can’t afford to be ignored by policymakers any longer. Announcing an agenda for addressing equity issues in HIV/AIDS policy, Gina Brown of the Gulf South-based NO/AIDS Taskforce said, “The face of the HIV epidemic is increasingly that of a minority woman living in poverty.” The recommendations, recently issued to the White House Office of National AIDS Policy, come from an alliance of fourteen groups that approach HIV/AIDS from civil rights, reproductive justice, and public health perspectives. While medical advances may have dampened the sense of political urgency around HIV/AIDS in recent years, the groups say that the disease still roils in the country’s most marginalized populations and is silently devastating women of color. Social stigma, a lack of community education, and structural inequities in the health system have all contributed to disparities in HIV/AIDS infection and care. According to the coalition’s report:

Approximately 50% of people living with HIV are estimated to be out of regular care, with women and communities of color comprising a disproportionate percentage of people out of care. Health care services accessed by people living with and affected by HIV represent a microcosm of the successes and failures of our health care system…. As the domestic HIV epidemic has become increasingly feminized, racialized, and impoverished over the past two and half decades, the development of an informed and appropriate response to the prevention and care needs of women, including transgender women, who are living with or vulnerable to HIV infection has become urgent.

Gaps in cultural competency hinder community access to quality care:

When working with women, providers are often insensitive or unaware of the intersection of HIV/AIDS with stigma and structural discrimination; trauma; gender identity; sexual orientation; race; mental health; substance use; and cross-cultural norms and traditions. Additionally, providers are often not fully informed of a woman’s reproductive options when living with HIV/AIDS and can transmit incorrect, harmful, and sometimes coercive information to their patients.

From a human rights standpoint, the groups say the problem is rooted in disparities in political power and self-determination. For example, marginalized communities are often denied the full spectrum of health care choices because HIV/AIDS care isn’t fully integrated with other basic sexual and reproductive health services. Some policies actively encourage discrimination against HIV-positive people in employment and parental custody decisions. Women are also severely burdened by the criminalization of HIV/AIDS—through laws allowing prosecution for not disclosing HIV status—as they often “cannot disclose their status due to fear of abuse, violence, or abandonment” and might be further deterred from getting tested. On the policy level, the groups point out that women living with HIV have been "notably absent" as stakeholders in state and federal advisory bodies, as well as in the staffs of HIV/AIDS-focused health organizations. The report recommends a combination of political, medical and educational measures, such as expanding Medicaid and Medicare, targeting federal funding toward rural and southern areas, and boosting the capacity of community-based health facilities and "women-led and women-focused HIV organizations." A mandate to involve HIV-positive women in planning efforts for HIV/AIDS programs could broaden the health care infrastructure to better reflect the most affected communities. The Obama administration has picked Dr. Regina M. Benjamin, a woman of color from rural Alabama, to serve as Surgeon General, giving an unprecedented public face to the country’s health system. We’ll see if the White House will finally raise the profile of women of color in the national conversation on the epidemic of our time. Image: L.A. Progressive