Measuring HIV Stigma
The ETE Dashboard tracks progress towards ending the HIV epidemic in New York primarily through 16 key population-level metrics in HIV care and prevention. Among these metrics, HIV stigma is unique in that quantifying stigma at the population level is not as straightforward as measuring other metrics, since it revolves around individuals' perceptions. New York State has set an ambitious goal to decrease stigma experienced by individuals living with diagnosed HIV by at least 25% by the year 2024. Despite the challenges of measurement, understanding and addressing HIV stigma are vital steps toward putting an end to the HIV epidemic.
The percentage of people living with diagnosed HIV who have experienced stigma has decreased to 28% in 2020 from a high of 38% in 2017.
HIV stigma, as defined by the Centers for Disease Control and Prevention (CDC), refers to negative attitudes and beliefs about people with HIV, leading to prejudice and social exclusion1. Stigma can act as a significant barrier to routine HIV testing and care, as well as accessing and utilizing effective prevention methods. To achieve the aims outlined in the ETE Blueprint Recommendations, addressing stigma is of utmost importance, as it intersects with other forms of discrimination, further limiting access to HIV care among vulnerable populations and groups2. Combating HIV stigma requires a multi-faceted approach, including initiatives like peer-guided HIV treatment, wider distribution of PrEP, and community-specific anti-stigma media campaigns.
To measure HIV stigma, the ETE Dashboard relies on NYS and NYC data from the Medical Monitoring Project (MMP), an annual CDC-led survey that reports nationally representative estimates of behavioral and clinical characteristics of adults with diagnosed HIV. Through a 10-item scale, the MMP assesses four dimensions of HIV stigma: personalized stigma, disclosure concerns, negative self-image, and perceived public attitudes. The median score of these dimensions represents the quantified "stigma experienced" metric displayed on the ETE Dashboard3.
To effectively address stigma at individual, clinic, and statewide levels, researchers, service providers, and policymakers need to have a reliable way to track and measure its impact on different communities. The current single-score stigma metric is useful for unbiased analysis in various contexts, but it may lack the nuance needed to understand the intersection of identity and HIV stigma. Additional qualitative methods or modifying the Berger scale can provide more nuanced insights, but they might sacrifice standardization for cross-cultural comparisons4. As HIV stigma research continues to evolve, one clear takeaway is that stigma remains a significant barrier to accessing HIV prevention, treatment, and care for many communities.
Understanding and reducing HIV stigma are critical steps to ending the epidemic. Monitor the annual progress of stigma and the other official ETE Metrics on the Dashboard’s ETE Metrics page.
1: “Facts about HIV Stigma | HIV Basics | HIV/AIDS | CDC,” October 22, 2020. https://www.cdc.gov/hiv/basics/hiv-stigma/index.html.
2: “NYSDOH 2015 Blueprint on Ending the AIDS Epidemic.Pdf.” https://www.health.ny.gov/diseases/aids/ending_the_epidemic/docs/blueprint.pdf.
3:“Behavioral and Clinical Characteristics of Persons with Diagnosed HIV Infection -- Medical Monitoring Project, United States, 2018 Cycle (June 2018 - May 2019).” HIV Surveillance Special Report. Centers for Disease Control and Prevention, https://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-special-report-number-25.pdf.
4:Deepa Rao, John B. Pryor, Bambi W. Gaddist, and Randy Mayer. “Stigma, Secrecy, and Discrimination: Ethnic/Racial Differences in the Concerns of People Living with HIV/AIDS.” AIDS and Behavior 12 (March 2008): 265–71. https://doi.org/10.1007/s10461-007-9268-x.