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Yes, race matters: Addressing the continuing disparities and inequities in HIV among Black Americans

Allison Agwu, MD, ScM, FIDSA
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In Baltimore, one of the jurisdictions included in the national Ending the HIV Epidemic initiative due to high rates of HIV transmission, I care for a majority Black patient population that is either at risk for acquiring or living with HIV. As an adult and pediatric infectious diseases–trained HIV specialist, I have cared for everyone from infants born to mothers with HIV to seniors who have had HIV for nearly 40 years. Black History Month has prompted me to reflect on my experience as a Black physician and that of my community and my patients.

Racism and social determinants of health and HIV

I see the impact of the social and structural inequities and entrenched social determinants in my community daily. Enduring structural and institutionalized racism permeates every aspect of accessing HIV prevention and treatment, often resulting in disparate outcomes among my patients. I have a longstanding commitment to care for those patients in front of me and amplify their voices and experiences in my work: Racial inequities in prevention, treatment and outcomes must be recognized before they can be dismantled.

This past summer, as I prepared to participate in a webinar on racial inequities in HIV in the South, I received an email from a health care provider who denied the existence of these inequities and called the topic “a baseless idea for a chat.” The provider concluded by apologizing for “rocking my boat” in advance of my talk, stating that it was important for me to know. That communication reminded me why we need to talk more about race in HIV prevention and treatment as health care providers who interact with Black patients. Without a clear understanding of inequities, these providers become part of the problem. To this provider, I will share this:

In 2020, fires were burning in cities across America in the aftermath of the high-profile murders of Ahmaud Arbery, George Floyd, Breonna Taylor, and countless other named and unnamed Black bodies who have perished since the first Africans arrived on American soil. America’s “racial reckoning” saw numerous protests, falling Civil War monuments and statues, new offices of diversity and inclusivity, discussions and debates about critical race theory (aka, what happened and how it affects all of society), and declarations of racism as a public health emergency by several cities.

The long-lasting impact of history

Through a medical lens, race has affected every aspect of medical knowledge, history and practice, from gynecological procedures still performed today that were originally developed using the unanesthetized bodies of enslaved Black women owned by J. Marion Sims to distorted assessments of pain perception and less pain medication given to Black patients. Higher infant mortality rates among Black women persist even today. These undisputed historical and current facts underlie why many Black Americans have an ingrained distrust of the medical system, which can impact how they interact with this system and receive care, affecting their outcomes.

The data are clear when it comes to HIV and the utilization of preexposure prophylaxis or antiretroviral treatment among Black Americans, who are approximately 13% of the U.S. population but account for 42% of new HIV diagnoses. Black cisgender women make up the most significant proportion of women acquiring HIV, and reports show 62% of Black transgender women have HIV compared to 17% of white transgender women. Black men who have sex with men comprised the highest proportion (26%) of the 36,801 new HIV diagnoses in the U.S. in 2019.

Despite the known risk of HIV acquisition among Black MSM, PrEP initiation and utilization rates among young Black MSM are lower. If current HIV diagnosis rates persist, about 1 in 2 Black MSM in the United States will be diagnosed with HIV during their lifetime. Projections like these can lead to a sense of futility for some and paralyzing, internalized stigma for others.

Social and economic factors may explain why Black Americans have worse outcomes on the continuum of HIV care. While there have been some subtle improvements in the rates of HIV diagnoses among Black Americans, they continue to have lower rates of receiving care, retention in care and viral suppression, which can improve survival and reduce HIV transmission.

What we can and must do

Given the biases and mistrust that exist, it is critically important that the workforce that cares for individuals with HIV be diverse to assure that the intersectional issues many are facing directly related to race are seen and addressed. Representation matters in the workforce caring for this population, and we must prioritize increasing the number of health care professionals from populations underrepresented in health care.

The National HIV/AIDS Strategy, which aims to accelerate efforts to end the HIV epidemic by 2030, includes the goal of reducing HIV-related disparities and health inequities through educating and training health care professionals and front-line staff on stigma, discrimination and unrecognized bias toward populations with or at risk for HIV. Sustained intentional efforts are needed to educate health care professionals who discount the impact of race on HIV prevention and treatment outcomes. Without education, providers and their interactions with their colleagues and, unfortunately, their Black patients, add to stigma, marginalization and the overall problem. We all can and must do better. Adaora A. Adimora, MD, MPH, FIDSA, professor of medicine and epidemiology at the University of North Carolina, delivered a powerful lecture during IDWeek in 2020 focusing on how social and political forces contribute to the distribution of HIV among Black Americans that all clinicians should watch.

I have been quadruple boarded in medicine, pediatrics, and pediatric and adult infectious diseases, and I proudly check the demographic box that most closely aligns with my identity and lived experiences — “African American/Black.”  I, too, have many intersectionalities that enrich who and what I am. My boat is not “rocked” by health care professionals who do not believe in the impact of race on public health and medicine. To the contrary, I am energized by those comments. I will continue to advocate tirelessly for all individuals at risk for or living with HIV, with a special unapologetic emphasis on improving care and outcomes for people with HIV from the diverse African diaspora.


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