Rep. Kelly’s Bill to Increase Clinical Trial Diversity Receives Subcommittee Hearing

June 29, 2022

WASHINGTON, DC – Today, the House Energy and Commerce Health Subcommittee held a hearing on H.R. 7845, Congresswoman Robin Kelly’s (IL-02) NIH Clinical Trial Diversity Act. This bipartisan legislation builds upon the NIH’s current policies to enhance the inclusion of women, racially and ethnically diverse individuals and people across the lifespan in all NIH-funded trials.

“Today’s hearing was an exciting step forward for my bipartisan NIH Clinical Trial Diversity Act. This legislation will help ensure that the people who are diagnosed and disproportionately dying from certain illnesses and diseases are included in clinical trials from the earliest phases,” said Rep. Kelly. “Including underrepresented communities in these trials is critical in finding successful treatments and cures for all Americans and for the United States’ scientific leadership.”

Congresswoman Kelly invited as a witness Dr. Kirsten Bibbins-Domingo, Ph.D., M.D., M.A.S., Professor of Epidemiology and Biostatistics and the Lee Goldman, M.D. Professor of Medicine at the University of California, San Francisco. Dr. Bibbins-Domingo testified about the urgent need to diversify clinical trials to ensure that all Americans are able to benefit from scientific advancement and novel treatments.

“Lack of representation and inclusion in research is costly to the U.S. - it impedes scientific progress, limits access to innovation for patients, decreases trust in science and medicine, and contributes to health disparities in the U.S. that cost the country billions,” said Dr. Bibbins-Domingo.

Dr. Bibbins-Domingo’s full witness testimony is available here.

The NIH Clinical Trial Diversity Act will:

Require NIH to work with clinical trial sponsors to develop clear and measurable recruitment and retention goals based on disease/condition prevalence as well as a rationale for specified goals and a recruitment plan;

Ensure the availability of less burdensome follow-ups during clinical trials (e.g. fewer follow ups, phone participation, weekend hours) to increase participation of underrepresented populations;

Launch a public awareness campaign across federal agencies related to research participation opportunities.

The NIH Clinical Trial Diversity Act is endorsed by the American Academy of Family Physicians, American Cancer Society Cancer Action Network, American College of Physicians, American College of Obstetricians and Gynecologists, American Medical Association, American Medical Student Association, American Psychiatric Association, American Psychological Association, Association of Black Cardiologists, Beyond Celiac, Doctors for America, FasterCures, Generation Patient, International Society for Psychiatric Mental Health Nurses, Leukemia & Lymphoma Society, National Center for Health Research, National Organization of Rare Diseases, National Minority Quality Forum, NHMH--No Health without Mental Health, Public Citizen, Society for Public Health Education (SOPHE), Society for Woman’s Health Research, Susan G. Komen Foundation, Touch, the Black Breast Cancer Alliance, Universities Allied for Essential Medicines (UAEM) North America, and Verily.

Video of today’s Subcommittee hearing is available here.

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Issues:Health Care