The Urgent Need for Greater Access to HIV Prevention and Treatment in the Black Community

By Joe Pressley, Vice President of Public Policy and Government Relations, Amida Care and Sylvia Cowan, Vice President of Customer Experience, Growth and Retention, Amida Care

In observance of Black HIV/AIDS Awareness Day (February 7), we are called to reflect on the ongoing epidemic and its disproportionate impact on the Black community. The progress made in HIV prevention and treatment over the last two decades has been transformative, but for many in Black America, the promise of these advances remains out of reach. We are now in a new era of HIV care, and the time has come for a shift. Longer-acting HIV prevention and treatment represent a groundbreaking opportunity to end the HIV epidemic by reducing stigma and eliminating pill burden. Now is the time to commit to ensuring access.

Black Americans represent 14% of the U.S. population, but account for 37% of new HIV diagnoses according to the latest information from the Centers for Disease Control and Prevention (CDC). Among men who have sex with men (MSM) 34% of all new infections were among Black MSMs. Black women accounted for 54% of new HIV infections in U.S. women and Black transgender women accounted for 62% of HIV infections among transgender women. Despite these disproportionately high rates of infection and although they could greatly benefit from the highly effective HIV prevention medication pre-exposure prophylaxis (PrEP), Black Americans make up only 14% of PrEP users while White people represented 65% of PrEP users in 2022 despite making up only 24% of new HIV diagnoses, according to AIDSVu and CDC data.

Joe Pressley is Vice President of Public Policy and Government Relations at Amida Care, a Medicaid Special Needs health Plan providing expert HIV, sexual health, and gender-affirming care, and has been a committed HIV and community health advocate throughout his career.

These disparities are the result of a complex interplay of factors including inequities in access to quality healthcare, underfunded health education and awareness efforts, and the impact of systemic racism. Structural barriers, such as socioeconomic inequalities, the stigma surrounding HIV, and the legacy of mistrust of the medical community, contribute to higher rates of transmission, late diagnoses, untreated infections, and preventable deaths.

Longer-acting PrEP and antiretroviral therapy (ART) treatments that are administered via intramuscular injections are currently available, and the advent of new, longer-acting HIV treatment and prevention options that are easier to administer, such as microarray patches or under-the-skin implants, for example, offers a new ray of hope for communities placed most at risk. Many of these products, including pills, can be administered every 6 months – much less frequently than taking a daily pill – and as a result, have the potential to be a game-changer by improving adherence and enhancing quality of life.

Yet, while these treatments show enormous promise, we must ensure removal of structural barriers that could continue to prevent access to HIV prevention and treatment breakthroughs in Black communities. These barriers, such as limited access to healthcare providers who are familiar with these newer options, potentially high copays and deductibles, the lack of culturally competent care and mistrust of the medical system, and the general lack of awareness due to absence of culturally relevant education campaigns, may prevent many from benefiting from these advances. For many, the fear of discrimination or judgment from healthcare providers and even from their own families can be a significant deterrent in seeking prevention or treatment.

The underfunding of public health programs, particularly Medicaid, which is the largest insurer of people living with HIV in the U.S. who are low-income, and other programs that serve low-income and less-resourced communities, will further limit access to HIV prevention and treatment. Federal and state healthcare policies often fail to prioritize innovative interventions, and insurance coverage remains inconsistent, which could leave many without the ability to afford or access longer-acting HIV medications. Black Americans, particularly those who are uninsured or underinsured, find themselves caught in a web of exclusion from the latest, most effective HIV care.

Sylvia Cowan is Vice President of Customer Experience, Growth and Retention at Amida Care and has worked in the Medicaid/Medicare arena for decades, facilitating access to care for New Yorkers.

In the spirit of Black AIDS Awareness Day, we must call for community, health care, and policy leaders to get involved so that systemic changes are made and equitable access to HIV care is made available. Culturally relevant, community-centered education campaigns are also needed to raise awareness about longer-acting HIV medications. Engaging trusted community leaders and healthcare providers in this effort is key to combating misinformation and stigma.

The O’Neill Institute issued a policy brief in partnership with Amida Care and CAI calling on Medicaid to make critical changes to embrace the potential of longer-acting medication for HIV prevention and treatment. The brief includes several federal and state-level policy recommendations.

Black HIV/AIDS Awareness Day is not just a day of remembrance; it is a call to action. The HIV epidemic is far from over for Black Americans, but with the right investments, education, and support, we can ensure that the advances in HIV prevention and treatment reach those who can benefit the most. The introduction of longer-acting HIV prevention and treatment products has the potential to bring us critical steps forward on the road to ending the HIV/AIDS epidemic, but these innovations must be made accessible and affordable to Black communities. Only through sustained commitment to equity and action can we hope to end the HIV epidemic and ensure a healthier future for all.