Foundation for Sarcoidosis Research Launches the Coalition for Clinical Trial Equity to Address Barriers Faced by Black Patients

By: Foundation for Sarcoidosis Research via GlobeNewswire

May 16, 2024 at 17:29 PM EDT

CHICAGO, May 16, 2024 (GLOBE NEWSWIRE) -- Today, the Foundation for Sarcoidosis Research (FSR), the leading international organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients, takes a bold step forward in addressing health disparities by announcing the launch of the Coalition for Clinical Trial Equity as part of their latest phase of the Ignore No More Initiative, ACTe Now!: Roadmap 2 Progress. This initiative aims to increase representation of Black and African American patients in clinical trials, thereby improving health outcomes for marginalized communities.

Lack of diversity in clinical trials hinders the development of effective treatments that cater to the needs of all populations, especially those most severely impacted. Furthermore, it is estimated that increasing representation could decrease overall healthcare expenditures by as much as $1.2 trillion over three years.¹

“Without diverse representation, clinical research risks neglecting vital insights and life-saving treatments for those who need them most," stated Mary McGowan, Chief Executive Officer of FSR. "This coalition will leverage the extensive experience and diverse professional expertise of its leaders to drive forward actionable strategies. 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."

Building on learnings from the FSR Ignore No More Campaign and the learnings from an IRB-approved nationwide survey of Black sarcoidosis patients, the results of which are captured in this 60-page white paper, FSR initiated a search for like-minded organizations and individuals committed to implementing innovative and practical solutions to improve access to trials and address barriers to clinical trial diversity. The result is a 26-member Steering Committee, made up of a variety of stakeholders including patients, clinicians, medical societies, patient advocacy organizations, and industry, committed to leading the coalition’s efforts.

The coalition is well-positioned to guide efforts toward systemic change. The coalition will adopt a multifaceted approach, translating these recommendations into actionable strategies employed by three key work groups:

The FMLA Advocacy & Corporate Infrastructure group will focus on ensuring job security and fostering employer engagement to incentivize support for clinical trial participants.
The Patient Education & Engagement group will prioritize trust-building and patient education efforts.
The Patient Benefit & Compensation group will strive to broaden compensation practices, ensuring accessibility for all patients irrespective of their support system, income, or employment status.

"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,” said Jennifer Miller, PhD, Associate Professor at Yale School of Medicine. “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.”

"We are honored to be part of this important coalition and are committed to leveraging our experience and resources to drive meaningful change," said Mark Schoeberl, Executive Vice President at the American Heart Association. "Together, we can make significant strides towards a more equitable health care system."

For more information about the coalition, how to join and sponsorship opportunities, please visit www.ignorenomore.org.

Sponsored by Mallinckrodt Pharmaceuticals, Kinevant Sciences, and made possible in part by a grant from the Chan Zuckerberg Initiative.

About the Foundation for Sarcoidosis Research (FSR): is the leading international organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients through research, education, and support. Since its establishment in 2000, FSR has fostered over $6.5 million in sarcoidosis-specific research efforts.

Media Contact: Cathi Davis
Email: cathi@stopsarcoidosis.org
Phone: 312-341-0500

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¹ LaVeist, T. A., Gaskin, D., & Richard, P. (2011). Estimating the economic burden of racial health inequalities in the United States. International Journal of Health Services, 41(2), 231-238.

A photo accompanying this announcement is available at https://www.globenewswire.com/NewsRoom/AttachmentNg/9a9c5224-c3c8-4320-ae65-feb8cfe1898f