“Ignore No More”: FSR’s Fight to Make Clinical Trials More Equitable

The Foundation for Sarcoidosis Research (FSR) launched its “Ignore No More” campaign to bring national attention to the significant racial disparities in sarcoidosis outcomes — especially among Black patients. According to Mary McGowan, MHRM, president and CEO of FSR, research shows that Black individuals are 2.5 times more likely to develop sarcoidosis, nine times more likely to be hospitalized, and 12 times more likely to die from the disease compared with White patients. Black women, in particular, face the highest prevalence and worst outcomes, being 18 times more likely to be hospitalized.

McGowan explains that these alarming statistics inspired FSR to move beyond awareness and take direct action. After launching its initial five-month campaign focused on awareness among Black communities and clinicians, the organization conducted a national survey to understand barriers to clinical trial participation. The survey received over 400 responses — double the expected number — and revealed that the biggest reasons for low participation were that patients weren’t being asked, faced financial challenges and feared losing their jobs due to inflexible work policies.

This data led FSR to advocate for policy change. Partnering with other organizations, they brought their findings to Capitol Hill and successfully influenced the Department of Labor to clarify that the Family and Medical Leave Act (FMLA) covers individuals participating in clinical trials — as well as their caregivers. This means both patients and family members can take protected time off work to enroll or remain in a trial without fear of losing their jobs.

To further support this effort, FSR recently launched “Champions for Change,” an initiative urging employers to offer at least one paid day off for employees participating in clinical trials. Ten companies have already joined, and FSR hopes this movement will expand across corporate America to reduce barriers to participation in research — not just for sarcoidosis, but for all chronic diseases.

Looking ahead, FSR continues to work with a broad coalition of health organizations to break down barriers to inclusivity in clinical research. McGowan emphasizes that if we don’t include the communities most affected, it will take longer to find better therapies. FSR remains committed to ensuring all patients — especially those most impacted — are represented, heard and supported in the journey toward equitable care.