Foundation for Sarcoidosis Research Launches the Coalition for Clinical Trial Equity to Address Barriers Faced by Black Patients
May 16 2024 - 5:29PM
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 DavisEmail: cathi@stopsarcoidosis.orgPhone:
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