The diversity gap no one’s talking about—that has deadly consequences

You’ve probably heard of Plavix, a super-common drug used to prevent heart attacks and strokes in patients predisposed to these incidents. The drug is so ubiquitous—and so important to public health—it’s on the World Health Organization’s list of essential medications.

But you might not have heard that the drug doesn’t work on the 75% of Pacific Islanders whose bodies lack an enzyme needed to trigger it into effectiveness. And you definitely wouldn’t know this important fact if the medication had only been tested on white men.

Thankfully—given that disease spares no race, ethnicity, or gender—a new bill aims to correct yet another aspect of American life with a major diversity gap: clinical trials for medical research.

The bipartisan bill—led by Senator Susan Collins (R-ME) and co-sponsored by Senators Patty Murray (D-WA), Elizabeth Warren (D-MA), Tammy Baldwin (D-WI), and Mark Kirk (R-IL)—just passed the Senate Health, Education, Labor and Pensions committee on Wednesday. And it holds the potential to fix a long-running issue in medical treatment: Most clinical trials seriously miss the mark when it comes to reflecting the diversity of patient populations.

For example, less than 2% of the 10,000 cancer clinical trials funded by the National Cancer Institute between 1993 and 2013 included enough minority participants to meet the National Institute of Health’s own targets. And less than 5% of all respiratory research during that same period supported by the NIH reported inclusion of racial and ethnic minorities.

Pregnant and lactating women aren’t ending up in these clinical trials, either—nor are sexual minorities.

The impact of this lack of diversity can be deadly: When women and minorities aren’t included in medical research, these populations face an elevated risk for improper treatment, since providers then administer medications without having access to comprehensive data on how their patients might metabolize and react to the drugs.

This is where the new bill, officially dubbed The Advancing NIH Strategic Planning and Representation in Medical Research Act, comes in. The bill calls for the director of the NIH to develop a six-year plan to address these diversity gaps. It also demands better collaboration among NIH researchers to accelerate research into public health burdens and health disparities—and to prioritize including women and minorities in clinical research.

Practically speaking, it asks for researchers to conduct special investigations into how women and minority populations are impacted by interventions or diseases. It requires the NIH Triennial Report—the big report card that keeps track of the success and results of NIH grant recipients—to reveal the number of women and other minority populations included in clinical trials, broken down by gender, race, and ethnicity. And it calls on both the NIH and the Department of Health and Human Services to encourage and support research efforts related to the health of sexual and gender minority populations and to develop measures in the next two years to support participation of these communities in medical research.

Also getting special attention in the bill? Pregnant and lactating women, with the goal of developing a better understanding of what drug therapies are safe and effective for these populations.

In a statement, Senator Murray told me:

As medical treatments become increasingly tailored to patients’ unique needs, it is more important than ever that clinical trials account for all our communities and all stages of life, and I’m glad that our bill takes strong steps toward this critical goal. By reassessing research priorities so that NIH-supported clinical trials and other research better incorporate women and members of minority groups, including the LGBT community, we can significantly improve public health and biomedical research and make meaningful progress toward reducing health disparities. I am very proud of the work done to bring this bill to the table, and I look forward to working with my committee colleagues to move it forward.

The bill couldn’t come soon enough. All races, ethnicities, genders, and sexualities have a right to make sure their receiving the best medical treatment science has to offer, too.

Jen Gerson Uffalussy is a regular contributor to Fusion. She also writes about reproductive and sexual health/policy for Glamour, and television for The Guardian. She lives in Atlanta.