This lack of proportional representation is damaging to science and limits our ability to consider potential differences — and develop effective treatments — across population subgroups. Without more minorities and women in trials, we can’t effectively determine how someone’s race, ethnicity or even gender might impact their response to a particular treatment. It calls into question the accuracy of screening recommendations — such as for lung cancer — which could foment distrust of the medical system. It also means that Black patients with advanced cancer who have exhausted other treatment options are not getting access to experimental drugs that might extend their lifespan.
This problem of underrepresentation has a long history that is, in part, the result of a deep-seeded distrust of the medical system — rooted in infamous events such as the Tuskegee Syphilis Study. But it’s also the result of poor enrollment practices by researchers. Black patients too often don’t have adequate information about trials and how they can participate.
There are clear steps that lawmakers and the health care industry can take to correct these deficiencies.
From a policy perspective, the Food and Drug Administration must continue its critical educational work through the Project Equity initiative to develop and promote policies that increase equal access to clinical trials. Educational programs, like this summer’s National Black Family Cancer Awareness campaign, are critical as we work to raise awareness among African Americans.
Congress should continue to do the hard work to advance sensible policies to support better trial recruitment. For example, the bipartisan Diversifying Investigations Via Equitable Research Studies for Everyone, or DIVERSE, Trials Act would enable the Department of Health and Human Services to provide grants to bolster education and recruitment for clinical trials for diseases that disproportionately impact underrepresented groups. Introduced by Reps.Larry Bucshon, R-Ind., and Raul Ruiz, D-Calif., the legislation would also improve data collection requirements to ensure that we have the necessary information to treat all patients properly — no matter their race or background.
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