The Foundation for Sarcoidosis Research is pressing for ways to make it easier for African Americans to participate in clinical trials.
The organization held a congressional briefing on Capitol Hill to let members of Congress know that it has been difficult to enroll Blacks in clinical trials, even though they are most likely to suffer from Sarcoidosis.
A survey showed Black patients often do not have access to transportation, child care, or time off from work to make regular trips to a hospital as part of a trial.
And, the data shows they are the ones who most need the care.
“Unfortunately, the Black community has the highest prevalence and the worst outcomes of Sarcoidosis,” CEO of the Foundation for Sarcoidosis Research Mary McGowan said. “So, we see hospitalization rates that are 18 times higher. Overall, the African American community is three times more likely to get Sarcoidosis than the Caucasian community.”
The foundation has created the “Ignore No More” campaign to shed light on the problem.
It is also seeking a $5,000 tax credit and more flexibility from FMLA for clinical trial participants.