When I was a psychotherapist here in Chicago, many of my patients were black and living with HIV. In that work, I had many conversations about life after that diagnosis, and much of my time was spent addressing internalized fears. Many patients asked, “Will I die too soon?” “Will I have sex again?” “What if my loved ones don’t want to be near me anymore?”
As a clinician, it was my job to encourage clients to seek out stories from other HIV-positive individuals who were living well. I shared recent research on how life expectancy could be prolonged by taking HIV medication every day, exactly as prescribed. With time, many patients accepted the fact that they could, indeed, live long, healthy lives. But I realized the initial feelings of rejection were largely due to misinformation about HIV, as well as a lack of communication about new scientific discoveries to communities that have been disproportionately impacted.
Black communities face a dramatic impact. Data from the Centers for Disease Control show that African Americans accounted for 45 percent of new HIV diagnoses in 2015, though they comprise only 12 percent of the U.S. population. Because of this disparity, education about HIV treatment and transmission is not only critical for black community health as a whole, but also to avoid unnecessary stigma of those who might be directly impacted.
In 2016, HIV transmission rates decreased in Chicago. However, according to the CDC, black women comprised 60 percent of all U.S. women diagnosed with HIV in 2014, and black men who have sex with men (MSM) and transgender women continue to account for more U.S. HIV diagnoses than any other demographic. The decrease in infection rates demonstrates to me, as a researcher and community psychologist, the promise of continued prevention education. Yet, the high diagnosis rate demonstrates that we have more work to do to best serve these communities. In particular, it highlights the need for individuals to understand the myriad ways they can protect themselves from HIV transmission while still engaging in enjoyable sex with their partners.
Feb. 7 is National Black HIV/AIDS Awareness Day, which individuals and organizations observe by promoting HIV education, testing, and treatment in the black community. Now, more than ever, it is critical to consider what strategies will best combat HIV among African Americans.
Public health leaders, not just individuals, can help improve attitudes and behavior by making a concerted effort to ensure that information about scientific discoveries is spread to the wider public. For instance, HIV treatment changed radically with the advent of HAART, or highly active antiretroviral therapy. In the U.S., HAART has drastically improved the life expectancy of individuals living with HIV, transforming the disease from a terminal to a chronic illness. Today, one-pill-a-day regimens of HAART eliminate the need for most people living with HIV to take a large number of pills.
This clinical advancement in treatment is widely known among clinicians, researchers, and individuals living with HIV. Yet the public health community has not effectively spread this knowledge to the broader HIV-negative community. As a result, out-of-date notions persist about the HIV epidemic, such as the idea that HIV leads to a high probability of early death or the belief that there are visible signs of HIV infection.
To improve the sexual health of black communities, it is essential that researchers find better ways to communicate new discoveries to African Americans. Far too often, research findings are trapped behind the paywalls of academic journals, with an expectation that people who need to know the findings will eventually read the work. But the stakes are too high to take this passive approach.
Another example is a 2016 study of almost 1,200 couples in which one partner was HIV-positive, which reported zero transmissions to the HIV-negative partner when the positive partner was properly taking HAART medication. This information has been widely shared with individuals living with HIV, but it has not been communicated well to the HIV-negative public. As such, many HIV-negative individuals still fear intimacy with an HIV-positive person, whether a condom is used or not.
Knowledge of studies such as these will not be sufficient, by itself, to end the HIV epidemic in the black community. But research educates the public and allows individuals to make better decisions about their sexual health and to understand one another in less stigmatizing ways.
Recently, federal cuts to HIV-prevention funding led to the closing of a city-run clinic in Englewood that provided free testing for HIV and other sexually transmitted diseases. This closing is worrisome, given the disproportionate impact of HIV in black communities. However, it also presents a critical juncture for community leaders and individuals to be more vocal about the need for low-cost care, including testing and treatment in black neighborhoods. It is also an important time for community health partners to improve communication and resources for those living with or at risk for HIV.
To reduce HIV transmission in black communities, my team is creating an employment pipeline for black MSM and transgender women. Unemployment and financial instability can lead individuals to engage in sex work for survival and/or cause them to feel a lack of control over their life. So our goal is to empower this community to engage in healthier sexual behaviors by helping them work toward sustained employment. We are also developing a partnership with community pharmacies to improve access to prevention services in black neighborhoods in Chicago, Northwest Indiana, and Indianapolis.
We are making progress, and National Black HIV/AIDS Awareness Day is an important part of that work. It is my sincere hope that we are moving toward replacing misinformation with greater health literacy. That will be essential as we move toward stopping this epidemic.