Today is World AIDS day. For me personally, it represents my second year leading qualitative research on HIV prevention and treatment. Last month, I attended two conferences that dealt with HIV in very different ways, and something began to weigh on me heavily.
In the past month, I have realized that people talk about HIV and AIDS in terms of health disparities, but laypeople and researchers alike can struggle to grasp or explain the meaning of a disparity.
I first realized this at the American Public Health Association (APHA) annual meeting, when I heard a seasoned researcher mispeak. This researcher, likely fueled by adrenaline and nerves, represented HIV as a disease that primarily affects young, black men who have sex with men. This is not quite the truth. Men, African American or black people, and gay or bisexual people are all more likely than their counterparts to contract HIV. But once you look at the overall distribution of HIV cases, you see that this single, intersectional group, while at the highest risk, is not the dominant face of the disease.
After hearing a few other researchers make similar mistakes, I looked for a graphic to show the overall prevalence or incidence of HIV and found myself in a rabbithole of information about health disparities. In my opinion, disparities are far more meaningful when coupled with population level statistics that offer some overall perspective. Coming home from the conference, I tried to explain to friends, family and colleagues what I had heard and why I was frustrated, and it struck me that many could not easily grasp the meaning of a disparity. This called to mind a common catchphrase in statistics education: “Human beings are horrible at understanding probabilities.”
This phenomenon was given increasing significance in the following days. First, I heard another researcher at APHA ask why HIV prevention messaging always targeted black MSM (men who have sex with men), and I realized that it is not because of a social need so much as because the data is reported in this way. For the African American community, which can be more prone to homophobia, this cobranding of queerness and HIV has likely slowed the involvement of community institutions, such as churches, that could serve a bigger role in HIV prevention and treatment.
A couple of days after APHA, I attended the Stigma conference Howard University. APHA is a more research focused event, while the Stigma conference bridges researchers, practitioners and community members. The Stigma conference is emotional and cathartic. At this conference, I heard testimony after testimony from people who didn’t know they were at risk, people dealing with assumptions from others about how they got HIV, people treated unfairly for the level of risk associated with them, and ultimately people struggling to balance their HIV concerns with the rampant judgement placed on being HIV positive. It struck me that a lack of understanding of the full shape of HIV has had very direct consequences in these people’s lives.
As the Stigma conference went on, participants complained about the consistent targeting of HIV messaging, including messaging from research studies, for creating a constant stream of visual portrayals of the disease as one that affects only black, gay men.
In an age where there are daily medications to prevent HIV transmission as well as daily pills to help HIV positive people live full, healthy lives, where consistent daily use of the medications usually ensures that a person is both undetectable and untransmittable (a fancy word for not contagious), stigma is one of the biggest reasons why people dont receive necessary medical attention, and ultimately an important reason why so many continue to be sick or spread the disease.
Because of misunderstandings about the full shape of the disease, some put themselves at risk unknowingly and others are unfairly labeled. This disease affects all, despite varying risk levels. Ultimately we can’t guess the status of others, nor can we guess their mode of transmission. We can only know that with proper treatment, people who are positive can lead long, healthy lives and stay undetectable and untransmittable.