The Impact of Stigma on Public Health Practice

By Oscar Mairena October 22, 2012

The vision for the National HIV/AIDS Strategy (NHAS) is that the U.S. will reduce HIV infections and ensure that high-quality, life-extending care will be available to everyone “free of stigma and discrimination.” Given the importance of stigma in addressing the HIV epidemic, we recently hosted a seminar on stigma and public health practice at the 2012 United States Conference on AIDS (USCA). We shared findings from a MAC AIDS Fund (MAF)-supported survey we conducted with the National Coalition of STD Directors (NCSD) to assess the effects of stigma on Black and Latino gay men in the U.S. We also discussed stigma as a barrier to HIV prevention, its role as an obstacle to tackling the treatment cascade – leaving only 25 percent of those infected with undetectable viral loads – and presented two examples of stigma as a structural barrier to achieving the goals of public health.

The Goals of Public Health in HIV Prevention and Care

Stigma and the Continuum of HIV Prevention to Care

The HIV continuum of prevention to care begins with keeping those who are negative uninfected and ends with ensuring that those who are positive achieve the optimal care outcome – undetectable viral loads. However, in every step of this continuum, stigma may pose a barrier to achieving the HIV goals of public health and contribute to the 50,000 new HIV infections every year. NASTAD staff identified the HIV goals of public health as:

  • Preventing new HIV infections
  • Identifying those infected with HIV
  • Linking individuals living with HIV/AIDS to care
  • Retaining individuals living with HIV/AIDS in care
  • Treating individuals living with HIV/AIDS
  • Suppressing viral loads

According to research leading up to the NASTAD/NCSD survey on Black and Latino gay men, stigma poses several threats to public health in the prevention, treatment and care of HIV such as:

  • Reducing condom use
  • Reducing communication among HIV positive and negative gay men
  • Preventing gay men from getting tested, accessing and adhering to treatment
  • Increasing community viral loads

This pattern can be seen among many stigmatized communities. Individuals that experience several “kinds” of stigma, such as homophobia, racism, xenophobia, addictophobia and others, also experience higher levels of HIV incidence.

When it comes to treating HIV, only 82 percent of people living with HIV/AIDS (PLWHA) are identified and only 66 percent are linked to care. Perhaps one of the clearest challenges to be addressed in the Gardner cascade (below) is the sharp decline between those who are linked to care and those who are retained, demonstrating an increasing need to educate providers about the many struggles that PLWHA face, like homelessness, drug use, poverty and others.

Gardner Cascade of Engagement in HIV CareAmong those retained in care, a much larger percentage are on antiretroviral therapy (ART), highlighting the tremendous achievements in access to treatment and the significance of programs like ADAP, whose majority of clients (59%) are from communities of color, according to NASTAD’s National ADAP Monitoring Project. Still, only 25 percent of PLWHA have suppressed viral loads. Fortunately, however, the Affordable Care Act provides some opportunities to address these disparities and reduce stigma by:

  • Increasing access to care for vulnerable populations
  • Putting in place non-discrimination provisions
  • Investing in community-based prevention and public health initiatives
  • Supports culturally competent and linguistically appropriate outreach and enrollment
  • Requiring collection of population specific data
  • Investing in the health workforce, with an emphasis on preparing health providers to work in underserved communities

Examples of Stigma as a Structural Barrier to Public Health

Although research has provided overwhelming evidence that access to sterile syringes is effective in reducing transmission of HIV and viral hepatitis, without increasing drug use, syringe access continues to be limited in communities that need them the most. When it comes to HIV criminalization, many of these laws do not consider the many advances we have made to suppress viral loads, the effectiveness of condom use or actual risk of transmission based on “exposure.” Both of these policies are based on stigma, not science, and exacerbate the barriers we face in addressing the HIV prevention to care continuum.

In the first two years of NHAS implementation, there has been a focus in parts one and two of the vision statement: HIV prevention and access to care and treatment. As we look ahead to year three of implementation, the latter part of the vision, reducing stigma and discrimination, must continue to be priority at the federal, state and local levels. For more information on NASTAD’s anti-stigma work, check out our Getting to Zero statement, Statement of Commitment: Promoting Injection Drug User Health and our work on HIV Decriminalization.

To learn more about NASTAD’s seminar on stigma at USCA, view the seminar slides and webinar on the stigma survey findings.

Tell us how your state and community is addressing HIV-related stigma and discrimination by leaving a comment below.