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.
“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 27-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.
Steering Committee member organizations and institutions include Alliance to Cure Cavernous Malformation, American Heart Association, American Thoracic Society, Boehringer Ingelheim, EveryLife Foundation, Global Genes Rare Foundation Alliance, Mallinckrodt Pharmaceuticals, and National Medical Fellowships, Inc.
Expert leaders include clinicians, researchers and world-renowned bioethicists from Boston University, Cedars-Sinai Medical Center, Cleveland Clinic, Cleveland State University, Eastern North Carolina Health, Medical University of South Carolina, MedStar Washington Hospital Center, MetroHealth, Northwestern Medicine, NYU Grossman School of Medicine, Rutgers New Jersey Medical School, University of Florida Health, Gainesville, Washington University in St. Louis, and Yale School of Medicine.
Patient advocate leaders include Jessica Propps, Kathryn Washington, MPH, Mary Oldham and Purvis Hunt, MA.
Sponsored by Mallinckrodt Pharmaceuticals, Kinevant Sciences, and made possible in part by grants from the Chan Zuckerberg Initiative and Boehringer Ingelheim.
COALITION FOR CLINICAL TRIAL EQUITY STEERING COMMITTEE ROSTER 2024:
Adam Anderson, MD, Washington University in St. Louis
Andrew Berman, MD, Rutgers New Jersey Medical School
Ann Chauffe DO, MPH, FACR, Boehringer Ingelheim
Arthur Caplan, PhD, NYU Grossman School of Medicine
Brandon Moss, MD, Cleveland Clinic Foundation
Catherine Jackson, RN, MPH, Mallinckrodt Pharmaceuticals
Charles S. Modlin, Jr., MD, MBA, MetroHealth
Connie Lee, PSY.D., Alliance to Cure Cavernous Malformation
Divya Patel, DO, University of Florida Health, Gainesville
Donald Richards, MD, Cedars-Sinai Medical Center
Ennis James, MD, Medical University of South Carolina
Jennifer Miller, PhD, Yale School of Medicine
Jessica Propps, FSR Ignore No More Patient Advocate
John Laughner, American Heart Association
Kathryn Washington, MPH Patient, FSR Ignore No More Patient Advocate
Logan Harper, MD, Cleveland Clinic
Mary Oldham, FSR Ignore No More Patient Advocate
Nana Afari-Armah, MD, MedStar Washington Hospital Center (MedStar Health)
Ogugua Obi, MD, MPH, MSc Eastern North Carolina Health
Peter Sporn, MD, Northwestern Medicine
Priscilla Rodriguez, MPH, EveryLife Foundation
Purvis Hunt, MA, Ignore No More Patient Advocate
Rachel Barron, Global Genes Rare Foundation Alliance
Sonya Charles, PhD, Cleveland State University
Stuart Sweet, MD, MPH, American Thoracic Society
Tracey Newman, National Medical Fellowships, Inc.
Yvette Cozier, DSc, MPH, Boston University