When the Milken Institute and the Ann Theodore Foundation launched a grant program to fund a clinical trial for a promising therapeutic in sarcoidosis, the team learned that coordinating such a trial would be challenging for two reasons: the complexity of the disease and the underlying systemic inequities that shape access, participation, and care.

Sarcoidosis is a rare but serious inflammatory disease of unknown origin, affecting approximately 150,000 to 200,000 people in the United States. It disproportionately affects Black Americans, particularly Black women, who experience some of the highest rates of the disease. It can cause pain, fatigue, aching joints, and brain fog. Depending on the organs affected, it can cause chest tightness, blurred vision, skin scarring, or heart rhythm disturbances. It looks very different from person to person. While it might go away on its own with few to no symptoms, for some, it may come and go intermittently, or even impact vital organs, causing irreversible damage or death.

Due to historically underfunded research on the disease, scientists and clinicians have a limited understanding of sarcoidosis. That, in turn, leaves many people misdiagnosed, dismissed, or untreated. Generalized symptoms associated with the disease, such as fatigue, can lead many people with sarcoidosis to endure a journey over several years before reaching a diagnosis. Once diagnosed, only a few treatment options are available—and those available merely mitigate symptoms rather than reverse the disease. Such treatments like corticosteroids and chemotherapeutics come with significant side effects, necessitating the development of safer, more effective options for patients.

What makes the research gap especially troubling is who bears the burden. Black Americans live with sarcoidosis 2.2 to 5.6 times more frequently than White, Hispanic, and Asian Americans. Black women have the highest prevalence of any group, double that of Black men, and three to six times that of White, Asian, and Hispanic women. Black Americans also tend to experience more severe cases. Yet despite this disproportionate impact, Black people make up as little as 5 percent of clinical trial participants across interstitial lung diseases, which refer to diseases that can cause inflammation and scarring in the lungs, including sarcoidosis.

Read the full article about funding sarcoidosis research by Caitlyn Barrett and Quinton Banks at Nonprofit Quarterly.