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Plans working to end the epidemic should be evaluated and reframed to focus on reducing stigma while tapping into resilience
Kristen D. Krause is an HIV/AIDS and LGBTQ+ researcher and faculty member at the Rutgers School of Public Health. She is also the deputy director of the Center for Health, Identity, Behavior and Prevention Studies.
In 1999, I was in the fourth grade when I found out my dad had been diagnosed with HIV/AIDS three years earlier.
He decided to share his story with me as my curiosity peaked while we were watching the medical drama ER— one of the characters, Jeanie Boulet, had tested positive for HIV and I started asking questions.
Fortunately, widespread availability of antiretroviral treatment had been implemented the year he was diagnosed, and his health slowly improved with time by consistently maintaining adherence to treatment – something that remains necessary today.
When I asked my parents if I could tell a friend, they agreed but educated me about the stigma surrounding HIV and warned me to be prepared for potential fallout. Once that kind of information is revealed to someone, it can’t be taken back. As a 10-year-old, that was a tough metaphorical pill to swallow. However, I understood where they were coming from.
Luckily, my friend and her family were supportive, but I felt the weight of that potential stigma for years to come as I navigated who was privileged to gain that piece of information about our lives. Nearly 25 years later, I am now an HIV/AIDS and LGBTQ+ health researcher who has learned that HIV-related stigma can be partially traversed through resilience.
For the past couple of decades, there have been many debates around how to define resilience – some classify it as a trait, others explain it as a process, and my colleagues and I have previously characterized it as both. Put simply, resilience is the ability to bounce back and overcome challenging situations and, in my opinion, people living with HIV/AIDS are the epitome of resilience.
The landscape of the HIV/AIDS epidemic is much different in 2023 than it was in 1999. Now considered a chronic condition and no longer a death sentence, leading agencies such as UNAIDS and the U.S. Centers for Disease Control and Prevention are having real conversations about what ending the HIV epidemic can and should look like.
With many plans focusing mostly on preventing new infections, it is crucial that we don’t leave people living with HIV/AIDS out of the equation, especially since viral suppression is a key aspect of many strategies.
Additionally, with more than half of all PLWHA in the U.S. being over the age of 50, we are actively learning what it means for people to age with HIV into later adulthood. As such, we’re starting to understand what the long-term biological, psychological, and psychosocial health outcomes may look like for this population.
A key consideration for those who were diagnosed before the introduction of an antiretroviral treatment and are part of the LGBTQ+ community, is that they have had to endure multiple forms of stigma across over the years. Because we know HIV-related stigma can have adverse effects on overall health and well-being, it is imperative that public health practitioners, medical providers, policymakers and anyone who is involved in the lives of people living with HIV/AIDS work to curtail and eliminate stigma wherever possible.
An analysis that I led indicates HIV-related resilience may help protect against HIV-related stigma and is associated with endorsing fewer mental health conditions. However, more work needs to be done to understand how resilience can be used as a point of intervention for aging people with HIV/AIDS.
Plans working to end the epidemic should be evaluated and reframed to focus on reducing stigma while tapping into resilience. Because for many people with HIV/AIDS who faced an uncertain future navigating their health and well-being, many have fought hard to not only survive, but thrive.
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