Florida stays in the news for its tourism, weather, misadventures of “Florida man” and “Florida woman,” and a state government trifecta set on winning the so-called culture wars with an “anti-woke,” anti-immigrant political agenda that appears to be as cruel as it is petty. These newsy events are happening against a broader backdrop of fewer healthcare options for transgender people and pregnant people. Florida ranks 33rd in the nation for overall health. I’m going to let you in on a secret that doesn’t come up as often in the news: Florida has an HIV problem, and Black women are the women affected.
Black women have the highest HIV prevalence among all women in Florida.2 Another statistic from the Florida Department of Health: Black Florida women are 17 times more likely to receive a new HIV diagnosis than white Florida women. The science of HIV transmission is fairly simple: an HIV-negative person gets HIV from someone who either doesn’t know their status or knows their status and is not in healthcare. For Black Florida women, transmission occurs primarily by heterosexual sex, and so community-based HIV prevention means wading into uncomfortable but necessary conversations about sex and gender norms, HIV stigma and misinformation, and accurate but hard-to-hear health statistics.
I am a fellow in the Robert Wood Johnson Foundation’s Interdisciplinary Research Leaders program, which sponsors community-engaged research to foster a culture of health. We are a team of Black women researchers working on increasing HIV prevention among Black women in Central Florida, an epidemiologically-recognized area where new HIV diagnoses are on the rise. Florida is the state with the third highest number of new HIV diagnoses in the entire country and houses three of the top 10 US metropolitan areas for HIV incidence: Miami Dade-Broward-Palm Beach, 1st; Orlando-Kissimmee-Sanford, 5th; and Jacksonville, 9th.3 I do this work because I don’t want to see another woman who looks like me die of HIV. I want to contribute to righting past wrongs perpetrated by US health institutions on poor people and ethnic and racial minorities. I especially want to end HIV so that we can focus on resolving other current health problems in equitable ways.
To recruit participants and build relationships with local stakeholders, I attend events where community conversations about health take place. Local reactions to these statistics have been mixed; sometimes, they are met with surprise, often in conjunction with “no one talks about HIV anymore,” but I also hear “I don’t know if I believe that.” Given that HIV stigma is still so pervasive, I’ve prepared myself for a variety of responses to our research, but “I don’t know if I believe that” still gives me pause. When I ask for further explanation, some people think these statistics are being used as “one more thing” to denigrate the Black community. Can you blame anyone for feeling like statistics are being weaponized against Black people and communities? But how can well-meaning researchers get someone to understand the severity of a specific, local health issue whose negative trends can be reversed?
Health disparities research is predicated on making data-driven comparisons between groups, which seems innocuous and helpful. Health statistics can be stated without context, are always describing some useful aggregate, and can easily be converted into a talking point. White people, despite their own diversity, become the referent group to which all others are compared. Health statistics can, therefore, further alienate communities and end up reinforcing the very phenomena of systemic racism and anti-Blackness that we are trying to undo. This is not a simple plea for Black people to increase their health literacy, but instead a call for the end of harmful interference in Black people’s health efforts. There are a lot of talented people working in their various roles in government or nongovernmental spaces within these systems to improve health outcomes. Their efforts are being hamstringed by an overall unreceptive environment that does not prioritize Black women or their health, nor does it value sexual wellness, reproductive justice, or health equity for all.
Between distrust of health statistics and mistrust of medical and public health institutions, researchers and clinicians have a lot of work to do in slowly building equitable collaborations with community organizations and earnestly showing respect to people by appropriately compensating them for their time. It’s the responsibility of everyone who’s been doing this work for a long time to educate grant funders, journal editors and reviewers, and even the “health equity tourists” about what high-quality health equity work should look like and how it should be evaluated.
Health equity work is exhausting. Now that there’s national attention to health and some resources being put toward the social determinants of health, I am grateful that the current time is shining a spotlight on systemic issues of racism in healthcare rather than viewing racism as simply interpersonal behaviors of maltreatment. My goal is still to make people see that health disparities are not due to some unsolvable mystery or biological differences between racial groups but due to harmful policies, and that policies can be written or changed to improve health outcomes. Black Americans are resilient people, but that resilience should not have to require them to constantly do the impossible with almost no resources. To me, the phrase “Black health matters” is a call for everyone, especially local health professionals, to look at their own institutions and create and revise policies and guidelines that can improve Black people’s health. As all our fates are tied together in this American experiment, these changes will ultimately improve everyone’s health.
Meryleen Mena and Annika Doneghy are section contributing editors for the Association of Black Anthropologists.
1. United Health Foundation. 2020. “Florida Summary 2019.” https://www.americashealthrankings.org/explore/annual/measure/Overall/state/FL. Accessed November 10, 2020.
2. Florida Department of Health. 2019. Women Living with an HIV Diagnosis in Florida, 2018. Tallahassee: Florida Department of Health.
3. Centers for Disease Control and Prevention. 2020. HIV Surveillance Report, 2018 (Updated). Atlanta, GA: Centers for Disease Control and Prevention.
4. Daniels, J., and A. J. Schulz. 2006. “Constructing Whiteness in Health Disparities Research.” In Gender, Race, Class, & Health: Intersectional Approaches. Hoboken, NJ: Jossey-Bass/Wiley.
5. McFarling, U. L. 2021. “‘Health Equity Tourists’: How White Scholars Are Colonizing Research on Health Disparities.” https://www.statnews.com/2021/09/23/health-equity-tourists-white-scholars-colonizing-health-disparities-research/. Updated September 23, 2021. Accessed September 30, 2021.