Foundation for Sarcoidosis Research (FSR), the leading international organization dedicated to elevating research, raising awareness and providing support for individuals affected by sarcoidosis, is proud to announce the release of the Ignore No More Campaign on Clinical Trials Diversity: Advancing Clinical Trial Equity for Black Patients with Sarcoidosis White Paper which summarizes the findings and recommendations from an IRB-approved national survey of Black Americans to get a better understanding of the challenges and experiences they face in considering and participating in clinical trials. This white paper provides innovative recommendations to address these challenges proposed by nationally renowned key opinion leaders in sarcoidosis, diversity, equity, and inclusion, industry, and African American patients.
On Wednesday, May 24th at 12:00pm ET, FSR will conduct a Congressional Briefing, Advancing Clinical Trial Equity for Black Patients with Sarcoidosis & Other Conditions, to review these recommendations and propose a legislative solution to address some of these concerns. This event will be held in room 2075 of the Rayburn Office Building.
Speakers at the Briefing include:
- Representative Eleanor Holmes Norton (D-DC): Chair of the House Subcommittee on Highways and Transit, and member of the Committee on Oversight and Reform and the Committee on Transportation and Infrastructure.
- Erica Courtenay-Mann: sarcoidosis patient, FSR Patient Advocate, FSR Ignore No More Women of Color Committee and the ACTe Now! Patient Committee.
- W. Ennis James, MD: Program Director for the Susan Pearlstine Sarcoidosis Center of Excellence, member of the FSR Global Sarcoidosis Clinic Alliance, member of the FSR Scientific Advisory Board, FSR’s Ignore No More and ACTeNow! Clinical Advisory Committees, and FSR’s Clinical Studies Network.
- Jeryl Prescott-Gallien: actress, sarcoidosis advocate and spokesperson for FSR’s Ignore No More: African American Women & Sarcoidosis National Campaign.
- Mary McGowan: Chief Executive Officer of FSR.
To learn more and to register the for the in-person Congressional Briefing, visit stopsarcoidosis.org/congressional-briefing-2023.
Black Americans experience the highest incidence of sarcoidosis in the United States and have the highest hospitalization and mortality rates of all groups. They are 2.5x more likely to have sarcoidosis than White Americans and experience more severe and chronic forms of sarcoidosis leading to hospitalization and mortality rates that are 9x and 12x that of their White counterparts, respectively. Yet, according to the U. S. Food and Drug Administration (FDA) clinical trials for rare diseases specifically, Black Americans only represent 9% of clinical trial participants.
“We, as a society, must do a better job inviting and supporting Black American participation in clinical trials. Representation in clinical trials matters and is key to closing the gap to improve clinical outcomes for Black Americans impacted by sarcoidosis, and, indeed, all those impacted chronic illnesses. We invite legislators to join FSR and our community partners to take big strides to improve the lives of the most vulnerable and impacted by severe chronic illness,” said Mary McGowan, FSR Chief Executive Officer.
FSR sees the release of this white paper and the Congressional Briefing as a bold first step in addressing the disparities in access to clinical trials leading to better patient outcomes.
For more information, and to read the white paper, please click the button below.