Elizabeth Irungu

Stigma remains a major structural barrier to accessing effective prevention and treatment. It is important that we actively work towards addressing and ending stigma in order to end the HIV epidemic. This session discussed stigma related to PrEP, U=U and internalized stigma.

Sarit Golub reminded us that addressing PrEP stigma has had limited success because the focus has been on interpersonal processes such as changing attitudes among those stigmatizing or enhancing coping for those stigmatized. However, we should recognize and address how HIV stigma manifests in PrEP policies that may result in labelling and sterotyping PrEP users. Examples include targeting specific groups, using risk-based tools to determine eligibility and having PrEP protocols that are burdensome for those desirous of or using PrEP. PLHIV have difficulties advocating for U=U because of self-stigma and fear of being seen as advocating for condomless sex, which is perceived as risky. Nittaya Phanuphak from Thailand observed that it is unethical for providers to fail to inform clients about the benefits of U=U. She explained that policies that endorse U=U and those that affirm that informing clients about benefits of U=U is standard of care may mitigate against stigma surrounding U=U. Shaun Mellors observed that self-stigma begins with negative beliefs about oneself that cause feelings of shame and guilt resulting in social withdrawal and limiting self-care. The self, the society in which people live and the context in which people get diagnosed contribute to self-stigma.

It is important to understand and document how stigma is manifest at various levels including personal, interpersonal and policy levels. Interventions around addressing stigma are hard to measure however implementation strategies that address stigma should be developed and evaluated, and stigma reduction should be prioritized as an outcome for implementation studies. Importantly, data on strategies that work and those that do not should be shared.

Rayner Tan

This session featured presentations on stigma related to PrEP and Undetectable=Untransmittable (U=U) messaging, and insights on internalized or self-stigma. Presenters shared how such forms of stigma draw on moral frameworks that reproduce and reinforce them in HIV healthcare systems, and advocated for strategies to mitigate and address stigma in HIV.

Sarit A. GOLUB (United States) opened the session by highlighting that the majority of our focus on stigma has fixated on intra-personal properties rather than societal processes. By doing so, we often fail to address how HIV stigma manifests in our healthcare programs and protocols, and therefore fail to address and mitigate against structural stigma. For a start, we need to shift our paradigm from looking at ‘at-risk’ individuals as ‘targets’ of public health interventions, but rather as ‘agents’ of change. Nittaya PHANUPHAK PUNGPAPONG (Thailand) discussed how U=U-related stigma around the U=U messaging derives from sexual stigma and mores. It is perpetuated by healthcare providers who do not routinely communicate about U=U in an ethical or evidence-based way, but distorting, withholding or restricting U=U message violates medical ethics and sexual rights, and perpetuates inequities. Shaun MELLORS (United Kingdom) rounded up the session with a focus on self-stigma, which “cuts deep and leaves festering wounds, and takes a long time to heal”. Shaun reminds us that stigma is a thought while discrimination is an action, and we must differentiate between stigma and discrimination because they lead to different outcomes. When lumped together, it is often stigma that gets left behind.

This session discussed important nuances in our understandings of stigma, and provided concrete solutions to addressing stigma at both the individual and structural levels. These included changes to interventions that dialed back on HIV exceptionalism, reframing of interventions that lump epidemiological risk factors with demographic attributes, simplification of PrEP protocols, clear scripts for U=U messaging, and promoting interventions that work for self-stigma. However, calls for the measurement and reduction of stigma may be complicated by a lack of appreciation for the nuances between stigma and discrimination, as well as within stigma itself (for example, self-stigma versus other forms of stigma).