Engaging People Living with HIV in the Implementation of the National HIV/AIDS Strategy

Content From: HIV.govPublished: September 14, 20114 min read


Co-authored by Lauren Broussard, LGSW, MPH, Public Health Analyst, Office of HIV/AIDS Policy, U.S. Department of Health and Human Services

Ronald Valdiserri

None of the goals of the National HIV/AIDS Strategy (NHAS) can be realized without the ongoing support and contributions of the 1.2 million Americans living with HIV/AIDS. As part of our ongoing implementation of the NHAS, the U.S. Department of Health and Human Services (HHS) convened a consultation in late July with people living with HIV/AIDS (PLWH) to discuss their perspectives on the Strategy and to identify opportunities for their meaningful involvement in an array of activities in pursuit of the Strategy’s goals. People living with HIV/AIDS have a long history of advocacy on behalf of services, policies and research for their community. Their leadership has helped bring about many of the advances made over the past 30 years in HIV prevention programs and care and treatment services.

However, persistent stigma and discrimination surrounding people living with HIV/AIDS undermines efforts to encourage all people to learn their HIV status, and makes it harder for people to disclose their HIV status to their medical providers, their sex partners, clergy and others—including family members—from whom they may need to seek understanding and support. To confront this sad reality, the Strategy calls on all of us to reduce stigma and discrimination experienced by people living with HIV, specifically identifying the following important actions we can all take towards this end:

  • Engage communities to affirm support for people living with HIV: Faith communities, businesses, schools, community-based organizations, social gathering sites, and all types of media outlets should take responsibility for affirming nonjudgmental support for people living with HIV and high-risk communities.
  • Promote public leadership of people living with HIV: Governmental organizations, other institutions and groups (including HIV prevention community planning groups and Ryan White planning councils and consortia) should work with people living with HIV/AIDS coalitions, HIV services organizations, and other institutions to actively promote public leadership by people living with HIV.

During the consultation held July 25-26, the more than 30 persons living with HIV from across the nation shared their thoughts about these actions and other matters related to the National HIV/AIDS Strategy with each other and with representatives of the White House Office of National AIDS Policy (ONAP), HHS Office of HIV/AIDS Policy (OHAP), Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), Substance Abuse and Mental Health Services Administration (SAMHSA), Office on Women’s Health (OWH), Office of Minority Health (OMH), Indian Health Service (IHS), Health Resources and Services Administration (HRSA), and the Department of Housing and Urban Development (HUD). Among the many issues and opportunities identified during this discussion were:

  • HIV Criminalization – Some participants pointed out the need for action to repeal state laws that criminalize behaviors of people living with HIV/AIDS. These participants expressed concern about some state laws that criminalize consensual sexual activities and low transmission-risk activities and called for more candid discussion of the relative risk of various behaviors/activities. They stated that enforcing HIV criminalization laws may actually run counter to the public health goals of promoting HIV prevention and routine HIV testing and getting infected individuals into care.
  • Involvement of PLWH in Reformed Health Care System – Participants also underscored the importance of listening to the perspectives of PLWH leaders as we segue into new, emerging systems of health care being reformed by the implementation of the Affordable Care Act and influenced by the NHAS. They highlighted the important roles many PLWH have played as peer leaders or patient navigators and encouraged that those programs designed to promote testing, connect people to care and/or bring people back to care be maintained and strengthened.
  • Health Care Providers – A number of issues related to health care providers arose including concerns that HIV/AIDS discrimination and stigma among both public and private health care providers remains strong in some communities. Participants noted that experiences of stigma or discrimination deter PLWH from remaining in care, which hinders achievement of the Strategy’s goal to improve health outcomes for PLWH and reduce HIV-related disparities. Finally, some participants urged greater federal focus on ensuring adequate numbers of appropriately trained specialists outside of HIV/AIDS care to address the co-morbidities experienced by PLWH who are now living longer with the disease.

The participants brought forward many valuable perspectives and suggestions from diverse communities across the nation, illustrating the many realities of persons living with HIV/AIDS in our country that must be taken into consideration as we all work collectively to examine and improve our response to HIV/AIDS.