By Derek T. Dangerfield II, PhD
We are planning the next phase of an intervention to improve perceived HIV risk and PrEP initiation among Black sexual minority men. This intervention is called POSSIBLE, and we are discussing ways in which it can be scaled. Specifically, POSSIBLE uses a scripted peer change agent and a motivational interview-based script to learn about individuals’ lifestyle, goals, and values, explore their perceptions of HIV risk, and help them consider PrEP for HIV prevention. After building rapport and learning about participants’ goals, the peer asks, “How would getting HIV affect your goals?” This helps us to understand participants’ perceived disease severity, informs, and helps catalyze behavior change. Some believe that this question could be stigmatizing about living with HIV (even though the intended audience is for people who are not living with HIV). This concern led me to raise the question: “What’s so bad about getting HIV?”
Many, including Black sexual minority men, underestimate or depreciate HIV disease severity because people are living longer and have better quality of life with HIV. As well, prevention scientists have successfully persuaded communities that people living with HIV are healthy and can “live normal lives.” Global health campaigns such as “U=U” emphasize that the virus cannot be transmitted to others when the person has an undetectable viral load to reduce stigma. Contemporary HIV treatment campaigns have been crucial to helping communities understand disease susceptibility and reduce judgement of people living with HIV (although work to decriminalizing HIV is not done). However, prevention messages ignore other major issues associated with the consequences of living with HIV including mental health issues, stigma, and increased chronic and infectious disease risks. These parallel issues cloud individuals’ risk perceptions and impact their likelihood of engaging in prevention behaviors. People living with HIV should not be stigmatized, but the negative health consequences of HIV infection over the life course indicate that disease severity is greater than community members as well as health communicators may appreciate.
Classic behavior-change theories such as the Health Belief Model are designed to help individuals prevent disease, including HIV. According to the Health Belief Model, perceived disease severity is required for individuals to engage in prevention behaviors. Part of the reason some individuals, including Black SMM, have low HIV risk perceptions is because prevention scientists have inconsistent messages about disease severity. This is linked, in part, to efforts to reduce stigma towards people living with HIV. However, negative health risks along the life course that are associated with infection persist. It is, therefore, important that we find ways to effectively communicate disease severity because, stigma or not, people should not acquire HIV. Avoiding one HIV infection preserves individuals’ wellbeing and quality of life and saves the healthcare system several hundred thousand dollars in lifetime costs for one patient. Therefore, we must find appropriate ways to provide health information in ways that do not stigmatize but that effectively provides cues to action by describing the negative consequences of acquiring HIV.
HIV is no longer a death sentence. However, people living with HIV are more likely to develop chronic and infectious diseases including cardiovascular disease, STIs, and mental health issues than people who are not living with HIV. Interventions that address individual perceptions regarding HIV severity and susceptibility are needed to help improve PRH as a crucial precursor to PrEP interest, initiation, and adherence for community health. The critical work of HIV treatment and prevention research continues to be important.