FSR launches coalition to boost Black representation in clinical trials

Coalition for Clinical Trial Equity seeks to drive 'actionable strategies'

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

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The Foundation for Sarcoidosis Research (FSR) has launched the Coalition for Clinical Trial Equity, aimed at increasing the representation of Black and African American sarcoidosis patients in trials testing potential treatments.

Despite Black Americans being 2.5 times more likely to have sarcoidosis than white Americans, these patients represent just 9% of participants in clinical trials of rare diseases such as sarcoidosis, as previously reported.  This lack of diversity hinders the development of effective therapies for those with the greatest need, and is linked with higher healthcare costs, advocates say.

“Without diverse representation, clinical research risks neglecting vital insights and life-saving treatments for those who need them most,” Mary McGowan,  FSR’s CEO, said in a foundation press release.

The creation of the Coalition for Clinical Trial Equity comes on the heels of the FSR’s Ignore No More: African American Women & Sarcoidosis Campaign, in 2021, and its Ignore No More: ACTe Now! (Advancing Clinical Trial for Equity in Sarcoidosis) campaign, in 2022.

The 2021 campaign aimed to raise awareness of sarcoidosis among Black women, with a goal of improving diagnosistreatment, and outcomes in this patient population. The 2022 campaign, meanwhile, had as its focus increasing trial participation for Black patients.

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Since those two efforts, the FSR has searched for organizations and people committed to the implementation of measures to broaden access to clinical trials among the Black community to increase representation.

“This coalition will leverage the extensive experience and diverse professional expertise of its leaders to drive forward actionable strategies,” McGowan said.

“By increasing clinical trial participation among Black Americans, we can advance therapies, curtail medical costs, and enhance the quality of life for those affected by chronic illness,” McGowan added.

The new Coalition for Clinical Trial Equity is composed of a 26-member committee — comprising patients, clinicians, medical society and patient advocacy organization members, and industry representatives — all committed to advancing its goals.

One committee member is Jennifer Miller, PhD, an associate professor at Yale School of Medicine, and the director of the Good Pharma Scorecard, an index ranking pharmaceutical companies on their bioethical performance.

“As founder of the Good Pharma Scorecard and an advocate for ethical and transparent clinical research practices, I am honored to contribute to the Coalition for Clinical Trial Equity’s mission,” Miller said. “Drawing from my experience in evaluating pharmaceutical industry practices, I am dedicated to ensuring that clinical trials are equitable and accessible, particularly for underrepresented communities.”

By increasing clinical trial participation among Black Americans, we can advance therapies, curtail medical costs, and enhance the quality of life for those affected by chronic illness.

The coalition is organized into three main working groups with distinct but complementary goals: the FMLA Advocacy & Corporate Infrastructure group, the Patient Education & Engagement group, and the Patient Benefit & Compensation group.

The advocacy group will work toward ensuring job security and fostering the engagement of employers that support and motivate patients’ enrollment in clinical trials. The engagement group’s main goal is to advance trust-building and patient education efforts, while the benefit group aims to broaden compensation practices to ensure access to clinical studies irrespective of a patient’s economic and/or employment background.

The American Heart Association is also a member, with Mark Schoeberl, its executive vice president, saying the nonprofit is “honored to be part of this important coalition.”

“We are … committed to leveraging our experience and resources to drive meaningful change,” Schoeberl said. “Together, we can make significant strides towards a more equitable health care system.”