Champions for change – Paid time off initiative just made clinical trials participation easier

(Press-News.org) NEW YORK, NY – July 1, 2025 – Research has always been critical to improving patient lives. That is why the American Thoracic Society (ATS), a Coalition to Transform Clinical Trial Engagement Steering Committee (CTCTE) member, is proud to be one of seven organizations partnering with the Foundation for Sarcoidosis Research (FSR) to make it easier for patients, including those with chronic lung disease, to join research. The Champions for Change – Paid Time Off (PTO) Initiative is a national effort to reduce job-related barriers to clinical trial participation by partnering with employers to provide PTO for employees enrolling in trials.

Clinical trials drive medical innovation and often offer patients access to better treatment options. Yet those who could benefit most are frequently left out due to systemic barriers to participation. According to FSR’s national IRB-approved survey of Black patients with sarcoidosis, limited paid time off, inflexible work schedules, and income loss from missed work were cited as barriers to joining or completing a clinical trial.

Other regional and national studies have come to the same conclusion about job-related barriers contributing to lower enrollment and retention – especially among underserved communities. These burdens lead to exclusion from trials, which not only harms the communities most impacted by chronic conditions but also jeopardizes the clinical trials enterprise by failing to include patients from all backgrounds—limiting what we learn about potential treatments.

This initiative builds upon the work of the FSR and CTCTE which resulted in clarification from the Department of Labor issued in November of 2024, which indicates that the Family Medical Leave Act ensures job security for anyone living with chronic disease in the U.S. or their family member caregivers who enroll in clinical trials.

“As the President and CEO of a mid-size health-focused non-profit, I am acutely aware that the health of my employees is essential to the success of our organization. By providing my employees with paid time off for clinical trial participation, I not only signal to my employees that I care about them and their health and wellbeing, but it also starts the conversation at the workplace about the power of clinical trial participation to advance the development of better therapies and outcomes for all impacted by chronic diseases.  FSR appreciates ATS’s leadership on this initiative and as a member of the CTCTE, and call on other companies to join us to offer this as a benefit to their employees,” said Mary McGowan, who represents the FSR as a member of the Public Advisory Roundtable, the patient arm of the ATS.

“The burden of chronic lung diseases is very high and requires innovation, vision and collaboration across disciplines and communities. The patient community is critical in helping research scientists find the answers to extend the lives of patients and eradicate disease,” said ATS President Raed Dweik, MD, MBA, ATSF. “I am proud that the American Thoracic Society is leading the charge in taking this bold step to stand up for patient and their families as a Champion for Change. I am grateful to the Foundation for Sarcoidosis Research for their partnership and vision.”

The initiative was first introduced in May of 2023 by FSR at a Congressional Briefing in response to barriers identified in FSR’s 60-page white paper as part of a comprehensive roadmap to expand engagement of underrepresented communities in clinical trials. This year on Clinical Trials Day the initiative went public with seven national partners, including the ATS, committed to championing change for clinical trials in the workplace.

Listen to FSR President and CEO Mary McGowan discuss the initiative on the ATS Breathe Easy – The Latest podcast.

Founding members of the Champions for Change – PTO Initiative:
American Thoracic Society, Diverse Research Now, Foundation for Sarcoidosis Research, Mallinckrodt Pharmaceuticals, Mural Health, Recursion, and Sabai Global. Each of these employers has committed to providing at least one day of paid time off for employees participating in clinical trials— demonstrating their leadership in expanding access and driving innovation in medical research.

For more information about the Champions for Change – PTO Initiative and how to join the Coalition to Transform Clinical Trial Engagement, visit ignorenomore.org.

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