Make Your Voice Heard: Towards advancing racial equity & diversity in biomedical research

April 16, 2021

John W. Meade Jr. is AVAC’s Senior Manager for Policy and Kevin Fisher is AVAC’s Director of Policy, Data and Analytics.

In the US, April is National Minority Health Month, and April 11-17th is Black Maternal Health Week. It is well past time to focus on distinct health disparities among Black, Indigenous, and other people of color (BIPOC) and Latinx communities, especially given the CDC’s recent, welcome focus on health disparities and equity. For example, Black people make up 13-15 percent of the United States population but about 27 percent of COVID-19 cases in the US, and the COVID-19 mortality rate for Latinx people is 2.5 times higher than that of white people, just to name a few. These long-standing disparities are rooted in systemic and institutional racism and perpetuated through research, the programs that implement the fruit of research, and the way both are funded. The impact on the HIV field is pernicious. BIPOC and Latinx communities carry an outsized burden and are also excluded from contributing to the solutions. The field is deprived of the insights, knowledge, experiences, expertise, creativity and innovation of BIPOC and Latinx communities—a universe of potential that’s neglected and squandered.

The Biden Administration opened this year with a commitment to address four “converging crises” facing the country: the COVID-19 pandemic, economic recession, climate change, and racial discrimination and inequity. The first two crises are relatively new, but the last is a multi-generational plague crippling this nation. The slow progress toward racial equity and diversity in science, technology, engineering, and mathematics (STEM) research, and National Institutes of Health (NIH)-funded research has been the subject of many initiatives over the years. Yet a recent NIH-commissioned analysis makes clear that existing policies, procedures and practices continue to perpetuate racial disparities and biases in the grantmaking process. A Black researcher’s chance of winning NIH funding remains 10 percentage points lower than that of applications from white counterparts, and has a lower probability of being awarded the NIH R01 Type 1 funding that is critical to a scientific career, regardless of the investigator’s degree.

On March 1, 2021, as part of the UNITE initiative, the NIH released a Request for Information (RFI) on the approaches NIH can take to advance racial equity, diversity, and inclusion within all facets of the biomedical research workforce, and expand research to eliminate or lessen health disparities and inequities. Responses are due April 23.

A number of HIV organizations have responded to the RFI including AIDS United, the Black Gay Researcher Collective, the National Black Gay Men’s Advocacy Coalition and the Black Women’s HIV/AIDS Network. The Research Working Group (RWG) of the Federal AIDS Policy Partnership, which is a coalition of more than 60 national and local HIV/AIDS research advocates, patients, clinicians and scientists from across the country, including AVAC, has developed a response focused on how racial disparities/biases specifically impact HIV research. The RWG response, signed by over 25 US HIV organizations, can be found here and calls on NIH to:

i. Develop new and nurture existing partnerships or collaborations that NIH could leverage to enhance the NIH-funded biomedical research enterprise within BIPOC and Latinx communities.

Early in the COVID-19 pandemic, NIH provided Meharry Medical College, an Historically Black College based in Tennessee, with vital research and technical support to advance development of COVID-19 treatment and vaccines. Investments in research institutions such as Meharry can address barriers to accessing the complex NIH funding mechanism and conduct research that will benefit BIPOC and Latinx communities.

ii. Review and amend existing NIH policies, procedures, or practices that may perpetuate racial disparities/bias in application preparations/submissions, peer review, and funding.

NIH grant applications are notoriously difficult to navigate. BIPOC and Latinx researchers in particular have the “cards stacked” against them, often having limited support and ability to navigate a deeply entrenched, institutionalized and competitive system. More BIPOC and Latinx researchers can be recruited by offering application assistance, this can include streamlined guidance and mentorship from institutions with a track record of successful applications.

iii. Increase support for researchers and research institutions based in Africa.

Given the scale of the HIV/AIDS epidemic in Africa, it is critical to develop regional capacity to conduct research on strategies that will improve HIV prevention and care in countries in Africa most impacted by HIV/AIDS.

iv. Diversify HIV clinical trial participant populations.

The NIH is mandated to ensure the inclusion of significant numbers of women and minority populations in all NIH-funded clinical research to the extent that it is appropriate to the scientific study. The HIV Prevention Trials Network (HPTN) 083 study has been a notable success in reaching very ambitious recruitment and retention targets for highly marginalized communities of color. Building partnerships with community and collaborative engagement to identify problems and develop solutions made this success possible.

v. Incentivize BIPOC and Latinx individuals to become STEM scientists and infectious disease physicians and researchers.

The US government, including agencies such as the Department of Education, must invest in STEM and diversity programs to engage BIPOC and Latinx students from an early age, and address financial and structural barriers that may deter BIPOC and Latinx students from entering the fields of medicine and science.

The NIH must hear responses to their RFI from not only BIPOC and Latinx researchers, but from anyone committed to improving the ways in which HIV research is funded through the NIH. Responses are due April 23 and can be submitted here.

Join us and share your thoughts and feedback with the NIH on how to advance racial equity in biomedical research.