Roadmap to get back on track to end HIV starts at the community level

Public health interventions are more effective when funded at the community level. This is one of the most valuable lessons I learned as a senior policy advisor in the U.S. Senate. Partnering with — and ensuring adequate funding to — trusted community partners is even more critical in successfully battling the HIV/AIDS epidemic. Marginalized communities disproportionately impacted by HIV historically face barriers when seeking HIV-related treatment and prevention services. To assist in reversing that trend and ending the epidemic, Washington must appropriately fund organizations at the community level.

Before COVID-19 upended HIV prevention and care efforts in the U.S., we knew that marginalized communities faced a long, uphill battle against the virus — particularly those in the South. More than half of new HIV cases occur in the South annually, an alarming statistic that illustrates how much work still lies ahead to end the epidemic.

The pandemic has not only magnified the burdens for people living with HIV or at high risk of infection, but stripped community-based organizations (CBOs) on the front lines of HIV care of the critical resources they rely on to test, treat, and prevent HIV among their neighbors. These CBOs are a trusted first line of defense for vulnerable and at-risk communities and play a central role to end HIV in the South and nationwide.

The pandemic response created a ripple effect in the ecosystem to deliver HIV-related services to vulnerable communities. CBOs had to adapt their operations and expand their capabilities to include COVID-19 testing and food distribution, which stretched organizational resources and staffing thin. A recent analysis found that 38 percent of CBOs across the country that focus on HIV services struggled to transition from in-person to virtual programs amid the pandemic. As a result, HIV testing, diagnosis, prevention measures, and treatment all declined sharply, heightening the risk of complications from COVID-19 for vulnerable communities living with HIV.

New research shows that since the start of the pandemic in March 2020 through October 2021, testing for HIV across the country fell 11 percent below the 2019 national average, and HIV diagnoses fell by 15 percent.

While COVID-19 caused disruptions in HIV services across the country, no region felt the negative effects of the pandemic more than the South. The region, which comprises 17 states, currently has lower levels across HIV testing, diagnosis, and treatment initiation compared to 2019 averages, with 13 of the 17 states experiencing lower HIV testing levels.

For Washington, the solution to help reverse these trends starts with CBOs. Community-based organizations are best equipped to reach communities in the South that have been left behind by the pandemic, educate individuals about their HIV risk, and provide trusted treatment and support to patients they call their neighbors.

Congress must allocate more funding to the Minority HIV/AIDS Fund, a program designed to provide these organizations with resources to deliver critical services including prevention education, testing, and care to ensure equitable health outcomes.

My family knows first-hand the critical importance of the relationship between patients and trusted community organizations. When first diagnosed with HIV, my Uncle Steve was hesitant to share the news — even with health care professionals — due to stigma and mistrust of the health care system. Fortunately, he eventually received the treatment he needed and lived nearly two more decades until succumbing to combined complications of cancer and HIV. Despite eventually receiving treatment, his initial hesitancy made it more difficult to manage his health. It was clear that he was more comfortable seeking care and following recommended treatment plans from providers that he could trust and community partners that could relate to him. His story is just one of so many more of patients who depend on organizations who serve vulnerable communities to provide HIV treatment services.

Congress is well aware of the importance of CBOs, and has proposed a $3.1 million increase in funding in the Fiscal Year 2023 Labor, Health and Human Services, Education and Related Agencies (LHHS) funding bills that would help reduce new HIV infections and lingering HIV-related health disparities for vulnerable communities.

Our health leaders at the Department of Health and Human Services must also initiate a trans-agency assessment to understand the full scope of the impact of the pandemic on HIV-related services to help inform future decisions in public health and prevention.

Ending the HIV epidemic won’t happen overnight. But dedicating our focus to those most heavily impacted will set a precedent for future successes in eradicating the virus — community by community. COVID-19 may have derailed progress, but it will not upend our commitment to close gaps in access meant to treat our most vulnerable populations starting at the community level. It’s up to Washington to lead our collective effort to prioritize and support patient populations affected by HIV and provide critical resources that will help reverse the damage done by the pandemic. And Congress shouldn’t wait a day longer to do so.

Greg Mathis, Jr. is a former senior policy advisor in the U.S. Senate. During his time in the Senate, Mathis was the lead health care staffer on the Senate Finance Committee for Sen. Mark R. Warner (D-Va.).