Rep. Kelly Introduces Bipartisan Legislation
to Diversify Clinical Trials
WASHINGTON, DC – On Thursday, May 19th, Congresswoman Robin L. Kelly (D-IL), Chair of the CBC Health Braintrust, introduced the bipartisan NIH Clinical Trial Diversity Act to increase the diversity of participants in all National Institutes of Health (NIH)- funded trials. This 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. The NIH Clinical Trial Diversity Act is co-sponsored by Reps. Brian Fitzpatrick (R-PA), Yvette Clarke (D-NY), Tony Cárdenas (D-CA), and G.K. Butterfield (D-NC). The bill introduction comes one day in advance of Clinical Trials Day, a day marking what is believed to be the first randomized clinical trial, and which spreads awareness about the importance of clinical trials to medical and pharmaceutical discovery.
“The data are clear – underrepresented communities are disproportionately suffering and dying from certain illnesses and conditions. We’re not going to be able to address these disparities or help these communities unless we know how new drugs and therapies work in communities that are disproportionately impacted by disease. The way we learn more is by increasing clinical trial diversity,” said Congresswoman Kelly. “I am introducing the NIH Clinical Trial Diversity Act to ensure that all NIH-funded trials are moving medical science forward and including all Americans in our quest for treatments and cures. I am proud to be introducing this bipartisan legislation alongside my colleagues Reps. Fitzpatrick, Clarke, Cárdenas, and Butterfield.”
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 Cancer Society Action Network, American
Psychological Association, Association of Black Cardiologists, Beyond Celiac, Doctors for America, FasterCures, Leukemia & Lymphoma Society, National Organization of Rare Diseases, Susan G. Komen Foundation, No Health without Mental Health, Society for Public Health Education (SOPHE), Touch, the Black Breast Cancer Alliance, and Verily.
