Policies that Reduce Stigma are Critical to Ending the HIV Epidemic
December 14, 2022 | Maggie Davis, Rachel Scheckman, Victoria Pless
People living with HIV and certain people perceived to be at greater risk for HIV often face negative attitudes, stigma, and false beliefs. The White House Office of Infectious Disease and HIV/AIDS Policy announced the National HIV/AIDS Strategy (2055-2025) (NHAS) on World AIDS Day 2021 and released the associated Federal Implementation Plan this past August. Woven throughout the strategic goals and implementation plan are approaches to reduce HIV stigma and discrimination. Further, the NHAS is aligned with the End the HIV Epidemic in the United States Initiative.
HIV disproportionately affects Black and Hispanic/Latino Americans and men who have sex with men (MSM), with Black and Hispanic/Latino MSM accounting for the majority of new HIV diagnoses in 2020. Across the continuum of care, Black people are less likely to be diagnosed, receive care, and move to viral suppression than White people—indicating a significant disparity in access to and use of care. Further, studies on intersectional stigmatized identities and HIV indicate that people from socially marginalized identities (e.g., based on race, sexual orientation, disability status, profession) experience worse HIV treatment and care outcomes.
Stigma and misunderstanding HIV transmission have led to policies that discriminate against people living with HIV or against people who have been disproportionately impacted by HIV. One such discriminatory policy is prohibiting MSM from donating blood; another is criminalizing actions that are unlikely to transmit HIV in state HIV criminal exposure laws. Policymakers have been reconsidering several of these policies, with ASTHO joining the national call to modernize FDA blood donor guidance.
Outdated Blood and Blood Product Donation Policies Cause Stigma, Reduce Supply
HIV testing and screening technology has advanced significantly since the 1980s. In 1983, public health leaders and blood supply organizations learned of potential transmission of a then unknown syndrome (later identified as being caused by HIV) through the blood supply. Later that year, federal public health leaders recommended that members of groups with an increased risk of HIV transmission—including MSM, people who inject drugs, and immigrants from Haiti/Sub-Saharan Africa—should not donate blood or plasma. This led to a 30-year FDA policy requiring MSM to be permanently deferred from donating blood since 1977. In 2015, FDA reconsidered this policy, reducing the deferral period from indefinite to 12 months since a man has had sex with another man. In 2020, the deferral period for MSM was reduced to three months and remains the current policy.
Organizations such the American Medical Association have called on FDA to repeal the current MSM deferral policy and replace it with an evidence- and risk-based screening that does not exclusively consider sexual orientation or gender identity. Several countries—including the United Kingdom, Israel, and France—have already shifted to screening for high-risk behaviors in the three to four months leading up to blood donation. This practice of behavior-focused questioning is inclusive of all persons participating in higher risk activities, can reduce stigma and discrimination generated from current questioning about male-to-male sexual contact, and will increase the blood supply.
In addition to ASTHO members calling on FDA to change this policy, states and territories can implement other policies to reduce HIV stigma and reduce health inequalities. Such support includes educating people most at risk for HIV transmission, normalizing HIV testing as a preventative health measure, and supporting comprehensive sex education to improve awareness of HIV.
Educating People at Risk for HIV Infection Where They Are
Robust prevention education efforts ensure that access to information about HIV is available to all groups, especially those at highest risk. Federal educational resources provide intentional and specific information on how to reduce the risk of HIV transmission, meeting people where they are. Health agencies can partner with local community champions and groups, including community health workers (CHWs) and syringe service programs (SSPs) to provide this information to high-risk groups.
CHWs are trusted leaders with roots in, or a close understanding of, the communities they serve. As trusted leaders, they connect community members to health and social services and have been shown to improve access to care, culturally competent service delivery, and health outcomes. Public health agencies have partnered with CHWs to help reduce the number of HIV infections in communities by supporting HIV testing in nontraditional settings, connecting people living with HIV to care or services, and helping people access pre-exposure prophylaxis (PrEP).
Leveraging CHWs with lived experiences and similar backgrounds can reduce stigma, with at least one study showing that HIV interventions led by CHWs who are HIV-positive and HIV-affected significantly decreased HIV stigma among underserved Latinos in the U.S. Southwest. In April 2022, Florida enacted SB 768 to support CHW outreach to pregnant people who have a high risk of HIV or other sexually transmitted infections (STIs), providing education on medication options to prevent perinatal HIV transmission.
SSPs are community-based initiatives that offer access to sterile syringes and safe disposal of used syringes. SSPs also serve as an access point to other services and programs for people who use drugs. These services can include screening, care, and treatment for HIV as well as education on how to reduce the risk of HIV transmission, including discussions of safer sex and injection drug use practices. The New Hampshire legislature highlighted the effectiveness of SSPs to reduce HIV transmission as part of SB 279, enacted in May 2022, which created a committee to study overdose prevention programs like SSPs.
Encouraging Providers to Normalize HIV Testing
Healthcare workers have been identified as a potential source of stigma and a barrier to testing and care for people who are living with or are at risk of acquiring HIV. This stigma may be rooted in inadequate clinical education and training, which can be addressed through continuing education on cultural humility and inclusion. Additionally, normalizing routine HIV testing by adopting opt-out policies for providers can further reduce stigma. In 2022, Connecticut enacted HB 5500, which requires all primary care providers to offer patients 13 years old and older an HIV test during routine visits.
Supporting Comprehensive Sex Education
Comprehensive sex education refers to age-appropriate, medically accurate, evidence-based, and culturally responsive curriculum for students through grade 12, focusing on healthy relationships, communication, decision making, and human development. Adopting comprehensive sex education has been shown to reduce stigma around sexual behaviors in general, with a 2021 literature review of comprehensive sex education programs finding that inclusive and affirming approaches to human sexuality increased appreciation for gender and sexual diversity—including lowering rates of homophobia. Currently, sex education is required in 29 states and Washington, D.C.; only 38 states require education about HIV.
At least 44 states and Washington D.C. considered bills related to sex education during the 2021-2022 legislative sessions. For example, the Massachusetts Senate passed S 2541 in 2021, with the bill now before the House. If passed, it would require medically accurate sexual health education taught in a manner appropriate for students “regardless of gender, race, disability statues, sexual orientation or gender identity” and include instruction on preventing sexually transmitted infections like HIV. In 2022, California enacted AB 2586 to establish the California Reproductive Justice and Freedom Fund with the intention that it will “dismantle historic and standing systemic reproductive and sexual health inequities through medically accurate, culturally congruent education and outreach.”
Supporting policies that reduce HIV stigma and promote health equity will remain an important public health issue. ASTHO will continue to monitor these developments and provide relevant updates.