It is not news that recent HIV biomedical interventions in the United States, such as pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP), primarily center the needs of white gay men.
The lack of outreach about PrEP to communities of color, coupled with initial messaging that primarily emphasized white gay men, has resulted in minimal awareness among people of color, especially women. The historical erasure of Black people in general, and Black women in particular, in these interventions is tied to persistent racial and gender disparities in HIV transmission and treatment, which have and will continue to thwart any effort to curtail the pandemic.
Although more recent HIV awareness campaigns for PrEP targeting Black women—such as #PrEPForHer, launched by Washington D.C.’s Department of Health, and the Black Women and PrEP Toolkit from the Black AIDS Institute—are a step in the right direction, the issue is systemic and requires solutions that would transform institutional bias and eliminate programmatic oversights that undermine the holistic health needs of Black women.
PrEP, also known by its prescription name Truvada, involves the use of medication for people at high risk for HIV in order to lower their chances of getting infected; PEP involves taking antiretroviral medicines soon after
a possible exposure to HIV to prevent infection. Public health researchers and practitioners have increasingly highlighted the importance of PrEP and PEP for groups disproportionately affected by the pandemic. Still, a March 2018 study from the Centers for Disease Control and Prevention (CDC) found that in 2015 Black people accounted for a small percentage of PrEP prescriptions filled—just 7,000 people—although nearly half of the 1.1 million people in the United States who could have potentially benefitted from the medication were Black.
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Black women’s low PrEP use is particularly striking given their overrepresentation among U.S women newly diagnosed with HIV. Even though they comprise 13 percent of the country’s female population, Black women accounted for 60 percent of women with new HIV diagnoses in 2017.
Black women’s lack of knowledge, use, and access to both PrEP and PEP reflects the social and structural barriers that prevent them from learning about and receiving all kinds of life-saving health services and resources. These disparities are rooted in racialized sexism in the responses to HIV that began in the 1980s.
The early responses to the pandemic in the United States focused primarily on the experiences and needs of white gay men. While the activism of Black political and cultural leaders in the 1990s around the growing impact of HIV and AIDS among African Americans pushed the CDC to expand and refine its programs and research, Black women’s unique needs remained ignored in most funding agendas and public health interventions.
The consistent links between Black women’s poor health and structural inequalities—not least of all the lack of a safety net for poor women, inadequate postpartum care, and growing maternal mortality rates—demand that public health leaders shift attention to this community’s particular health needs.
Take, for example, the financial and access barriers to PrEP. The medication can cost up to $1,000 a month and is hard to obtain without a doctor. Many insurance plans cover the drug, government programs provide assistance, and the pharmaceutical giant that administers PrEP, Gilead, offers a coupon to defray co-pay costs. But most low-income people, many of whom are Black women, don’t have regular doctor visits and preventive care.
Researchers frequently note that Black women experience high unemployment rates and unequal pay, making it nearly impossible for many to access uninterrupted health insurance or covered doctor’s visits. Additionally, the lack of awareness of PrEP among primary care providers and their unwillingness to prescribe the medication can undermine Black women’s access to PrEP. The intersecting challenges of poor access to quality care, intergenerational poverty, and underemployment overshadow Gilead’s recent attempts to promote “diversity” by parading the bodies of people of color in its “Healthysexual” ad campaign.
A 2016 study found that the proportion of new PrEP prescriptions going to women has declined since 2012, and the medication’s overall level of awareness among women has been low. Black women’s low PrEP use highlights how public health interventions and marketing strategies fail to capture this population’s attention.
These systematic exclusions mean that Black women are failing to share in the advancements of HIV treatment. This unequal and unjust system is most pronounced in states with higher levels of structural stigma—what researchers call the “societal-level conditions, cultural norms, and institutional practices that constrain the well-being for stigmatized populations.”
Sadly, the Trump administration has only made a bad situation worse. In December 2017, President Donald Trump fired all members of a national HIV and AIDS advisory council, which then sat empty for a full year. Domestic funding for HIV and AIDS decreased by over $100 million in Trump’s proposed budget for fiscal year 2019. Slashed funding has resulted in reduced access to crucial preventive services, such as HIV screenings and programs that link people with HIV to care and treatment, as well as other services that include STD screening, hepatitis B tests and vaccines, and substance use counseling. On top of all of this, the chatter around supposedly banned words at the CDC, such as “vulnerable”, “diversity”, and “evidence-based,” only served to reinforce narratives around the priorities of the administration and its erasure of groups, such as women of color and transgender people, who are already overlooked in public health spaces.
During his State of the Union address, Trump promised to end the epidemic in ten years. But given his administration’s track record, the Department of Health and Human Services’ plans to reduce new infections over the next ten years is highly unlikely. The verbal pledge to “defeat AIDS in America and beyond” appears aspirational, at best, given recent efforts to cut funding to global HIV and AIDS programs and roll back the expansion of Medicaid, the largest source of insurance for people with HIV, providing medical coverage for more than 40 percent of people with HIV in the United States.
Any plan to halt the spread of HIV and AIDS must include culturally informed interventions that meet the range of needs, desires, and interests of Black women of different age groups, ethnicities, regions, and cultural contexts. For example, interventions must openly address any potential side effects of PrEP for Black women’s sexual and reproductive health. Interventions must also consider how women’s relationships with health providers and practitioners (both primary and specialized), as well as the medical establishment, shape their perceptions of risk and their adoption of prevention strategies.
And Black women’s social networks remain a crucial part of how they access prevention information, so interventions must use these networks to distribute accessible information. Importantly, given the enduring impact of inequality, poor health, and marginalization on Black women’s mental and emotional health, HIV interventions must supplement clinic visits with social and support groups designed and led by Black women.
Without directly addressing these systemic issues, no plan will end the HIV epidemic in the United States.