Yaa Simpson: Investing in Black-led community groups in Chicago area is critical to fighting HIV

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Despite decades of progress to combat and end the HIV epidemic, gaps remain that reflect our nation’s failure to support and care for its Black communities. Black communities and the organizations that serve them in Chicago, surrounding counties and across the country have long been neglected by policymakers.

In the face of innovations and advancements to better test, treat and prevent HIV, systemic racism continues to prevent Black-led community-based organizations, or CBOs, from accessing the funding and tools required to reach undersupported communities in areas of highest need. To address these inequities and begin overcoming systemic gaps in access and support, policymakers should prioritize HIV funding for Black-led CBOs while ensuring that health equity is a foundational pillar of all future health initiatives.


Over the last 15 years, HIV infection rates among Black populations in the U.S. have remained disproportionately high. As of 2019 in Illinois, an estimated 35,841 Black people were living with HIV, according to the mapping tool AIDSVu, including more than half (51%) in Chicago and at a rate of 595 people per 100,000 in Cook County. While the Chicago area’s HIV rates are alarming, COVID-19 and monkeypox have limited our ability to track, treat and prevent HIV infections, exacerbating HIV health care inequalities.

During the early part of the COVID-19 pandemic, 11% to 54% fewer HIV tests were administered, according to a study of four geographically diverse health care systems published in The Lancet Regional Health-Americas in March. Further, Centers for Disease Control and Prevention researchers found there was a 25% drop in the total number of new users of pre-exposure prophylaxis (PrEP) medication between March 2020 and March 2021 compared with predicted numbers. When taken as prescribed by a doctor, PrEP medication is up to 99% effective at preventing HIV infection for HIV-negative people.


Also, outpatient sites saw a significant decrease in office visits to HIV specialists after March 2020.

Even though Black people make up a smaller percentage of the population in the U.S., they remain a larger percentage of those affected by HIV. For example, in Chicago Black people make up 30% of the population but account for more than 48% of people living with HIV. These numbers unfortunately remain consistent in many urban areas and throughout much of the South.

Despite these realities, dismantling systemic racism and addressing HIV disparities for Black people will not happen if Congress continues to deprioritize needs in Black communities. These organizations are on the front lines of this epidemic, and staffers are trusted by the people they provide services to because they know and live in those communities. Black-led CBOs act as an indispensable force multiplier in preventing HIV transmission and supporting clients in their journey of care.

Some may argue that it should not matter if the CBOs are Black-led as long as they provide the necessary services to the community. However, a clinical trial in Oakland, California, found that Black men were more likely to engage in preventive health services if care was provided by a Black doctor. Researchers found that communication and trust levels were significantly higher when Black care providers were serving Black patients.

Similarly, a recent study based in Chicago, which was published by the National Center for Bioethics in Research and Health Care at Tuskegee University, found that Black-led providers were able engage in more continuous prevention services in spite of not receiving equitable funding allotments. Simply put, Black-serving organizations have been/ shown to be better equipped to serve and support Black people.

To reduce the disproportionately high number of people living with HIV in Black communities, Congress should allocate more funding to the Minority HIV/AIDS Fund, designed to help Black-led CBOs on the front lines of the HIV epidemic provide critical services, including prevention education, testing, linkage to care and viral suppression. Additionally, Congress must drastically increase the amount of funding specifically allocated to Black-led CBOs and ensure that those funds are allocated as intended.

Earlier this year, dozens of organizations representing diverse, affected communities delivered a letter to members of the House Appropriations Committee calling for an increase of $48.1 million to the Minority HIV/AIDS Fund.

But funding on its own will not be enough to solve these disparities, as outlined in the 2021 Chicago Department of Public Health report “The State of Health for Blacks in Chicago.” In addition to a call for more funding, this report outlines the need to advance awareness of health equity, incorporate health equity as a foundational principle in community planning, and acknowledge and dismantle the role of racism in health outcomes disparities.


It is beyond time that policymakers took systemic racism seriously and distributed funding in a way that repairs and corrects decades of grave injustices that communities here in Chicago, surrounding counties and across the country have endured. That means supporting organizations directly at the community level, amplifying Black voices in decision-making and empowering Black-led CBOs that resonate with the communities most in need of services.

Sista Yaa Simpson is a community public health researcher, founder of The Association of Clinical Trial Services (TACTS) and member of the Black Leadership Advocacy Coalition for Healthcare Equity (BLACHE).

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