Michael Chancley, Communications and Mobilization Manager, PrEP4All
Jeremiah Johnson, Acting Executive Director, PrEP4All

In the U.S., Black communities have been disproportionately impacted by HIV. Between 1981 and 2019, an estimated 2.2 million people have been diagnosed with HIV, an overwhelming number of whom have been Black (Bosh 2021). According to data from the Centers for Disease Control and Prevention (CDC), 42 percent of people diagnosed with HIV in 2019 were Black despite Black people comprising under 14 percent of the US population (United States Census 2022). In 2019, Black same-gender loving men comprised 25 percent of all new diagnoses while Black women represented 55 percent of new diagnoses among women (Centers for Disease Control and Prevention 2021). Similarly, Black transgender women were overrepresented among incident HIV diagnoses.

HIV pre-exposure prophylaxis, also known as PrEP, is the most effective method of HIV prevention for HIV negative people at risk of sexual exposure to the virus. First approved as a once-daily pill in 2012, PrEP is estimated to be up to 99 percent effective at preventing sexual HIV acquisition (Grant 2014) and at least 74 percent effective at stopping new infections among people who inject drugs (Choopanya 2013). Unfortunately, PrEP is grossly underutilized, with less than 25 percent of people indicated for PrEP by the CDC using the drug as of 2020 (Centers for Disease Control and Prevention 2022).

PrEP is a powerful public health tool with the potential to drive down new infections. Despite its wide endorsement, rigorous research to demonstrate safety and effectiveness, and potential promise to bend the curve of HIV in communities at the highest risk, enormous and growing disparities in PrEP utilization remain. Barriers, such as social stigma, provider bias, lack of awareness, and the complicated processes for receiving PrEP, all contribute to low uptake. According to data from the CDC, 91 percent of Black Americans who can benefit from PrEP have not received a prescription (Centers for Disease Control and Prevention 2022). PrEP cannot be counted as a success until Black America benefits from it.

The U.S. government has set the ambitious target to reduce new HIV infections by 90 percent by the year 2030, effectively ending the epidemic. To achieve this, we must scale up equitable PrEP access for people of color, which is only possible through the leadership of advocates, PrEP users, and service providers from Black and Brown communities. If we are serious about ending the HIV epidemic, Black communities must be centered in terms of access to treatment and prevention, with PrEP as a major strategy to stop HIV transmission.

In this spirit, PrEP4All’s Michael Chancley and Kenyon Farrow launched the PrEP In Black America Coalition, a partnership of PrEP4All, Treatment Action Group, AVAC, Positive Impact Health Centers, Atlanta Black Women Leaders On PrEP, iSTRIVE Research Lab, Equity & Impact Solutions, and the Black Public Health Academy. This coalition hosted the first PrEP in Black America Summit in September 2022 with the goal of centering the Black community in increasing PrEP access across the country. Over 80 Black activists, researchers, scientists, doctors, and policymakers attended in-person from 14 different states, along with 100 attendees joining virtually. Notably, the summit featured Dr. Oni Blackstock, Founder and Executive Director of Health Justice, as a keynote speaker, along with remarks from U.S. Representatives Barbara Lee and Bonnie Watson Coleman and representation from Senator Jon Ossoff’s office.

In February 2023, the Coalition released a report outlining key takeaways from the 2022 PrEP in Black America Summit titled For Us By Us: PrEP in Black America – A Master Plan for HIV Prevention in Black America (PrEP in Black America Coalition 2023). This pivotal report reviews the primary barriers affecting access to PrEP in the Black community; calls for the establishment of a National PrEP Program to address coverage, provider network, and messaging barriers to PrEP; outlines opportunities for new administration methods and modalities for PrEP; and discusses provider education and opportunities for intervention.

Already, the summit has galvanized community support for a National PrEP Program to address barriers the Black community faces when trying to access PrEP. In the months since PrEP in Black America, PrEP4All has garnered more than 6,000 signatures in support of a National PrEP Program from advocates across the country as well as over 1,500 individual letters to policymakers. This success could not have been achieved without partners in the PrEP in Black America Coalition. In addition, work with the PrEP in Black America Coalition has deepened our relationships with congressional champions, and we have had dozens of meetings with legislators and officials at CDC, the National Institutes of Health, and the U.S. Department of Health and Human Services.

Building on the success of the first PrEP in Black America Summit, planning for a second summit to be hosted in New Orleans is underway with the support of a steering committee of local Black HIV prevention advocates. This summit, planned for May 2023, will expand upon the programming from the September summit and address unique barriers faced by the most vulnerable subpopulations in the Black community, such as unhoused people, sex workers, and people being released from the criminal justice system.

Most importantly, PrEP in Black America exemplifies a new approach to HIV prevention advocacy nationally. This convening represents a first-of-its-kind effort to involve Black people in the ideation, implementation, and oversight of interventions to increase access to PrEP. Until now, HIV prevention efforts have failed to effectively reach Black people and have often exacerbated racial disparities in the HIV epidemic. By energizing and mobilizing Black advocates, researchers, and public health professionals in the development of a National PrEP Program from the start, PrEP in Black America ensures that Black people guide the program’s implementation, thereby increasing its likelihood of success.

Philanthropic organizations have the capacity to make a significant difference by investing in the kinds of advocacy PrEP in Black America represents:

  • Invest in advocacy and programs where key leaders come from Black and other underrepresented priority populations. Lived experience is a necessary component for success in the scale-up of any preventive health care intervention, including PrEP.
  • Invest in advocacy to change systems. To truly open the floodgates on PrEP for Black and other priority communities, we need talented, evidence-based advocates working to make preventive healthcare work better, even as we continue to invest resources to maximize access within overly complicated systems.
  • Invest in the unconventional. Passionate advocates that exist independently of powerful structures and stakeholders are uniquely positioned to catalyze change. Community-based advocates who are truly able to push back on government, pharmaceutical companies, and insurers are a necessary part of the overall advocacy ecosystem.

References:

  1. Grant RM, Anderson PL, McMahan V, et al. “Uptake of pre-exposure prophylaxis, sexual practices, and HIV incidence in men and transgender women who have sex with men: a cohort study.” Lancet Infect Dis. Sep 2014;14(9):820-9. DOI: https://doi.org/10.1016/S1473-3099(14)70847-3
  2. Choopanya K, Martin M, Suntharasamai P, Sangkum U, Mock PA, Leethochawalit M, Chiamwongpaet S, Kitisin P, Natrujirote P, Kittimunkong S, Chuachoowong R, Gvetadze RJ, McNicholl JM, Paxton LA, Curlin ME, Hendrix CW, Vanichseni S; Bangkok Tenofovir Study Group. “Antiretroviral prophylaxis for HIV infection in injecting drug users in Bangkok, Thailand (the Bangkok Tenofovir Study): a randomised, double-blind, placebo-controlled phase 3 trial.” Lancet. 2013 Jun 15;381(9883):2083-90. DOI: https://doi.org/10.1016/S0140-6736(13)61127-7.
  3. Centers for Disease Control and Prevention, “PrEP for HIV Prevention in the US,” (2022). https://www.cdc.gov/nchhstp/newsroom/fact-sheets/hiv/prep-for-hiv-prevention-in-the-us-factsheet.html
  4. PrEP in Black America Coalition. “For Us By Us: PrEP in Black America: A Master Plan for HIV Prevention in Black America.” Atlanta, GA: Black Public Health Academy, February 2023. https://actionnetwork.org/user_files/user_files/000/087/723/original/23_fubu_hiv_plan-3.pdf
  5. Bosh KA, Hall HI, Eastham L, Daskalakis DC, Mermin JH. “Estimated Annual Number of HIV Infections—United States, 1981–2019.” MMWR Morb Mortal Wkly Rep 2021;70:801–806. DOI: https://dx.doi.org/10.15585/mmwr.mm7022a1
  6. United States Census Bureau. “Population Estimates, July 2, 2022.” 2022. https://www.census.gov/quickfacts/fact/table/US/PST045222#PST045222.
  7. Centers for Disease Control and Prevention. “Diagnoses of HIV Infection in the United States and Dependent Areas 2019.” HIV Surveillance Report. vol. 32 (2021): https://www.cdc.gov/hiv/library/reports/hiv-surveillance/vol-32/index.html.
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