The Foundation for Sarcoidosis Research (FSR) has launched the Coalition for Clinical Trial Equity to tackle health disparities related to sarcoidosis within the Black community. As part of the Ignore No More Initiative, FSR is hoping to boost the participation of Black and African American patients to improve health outcomes for these marginalized communities.
What is sarcoidosis?
Sarcoidosis is an inflammatory disease in which immune cells, called granulomas, cluster together to combat the inflammation. Granulomas can develop in the body, often in the lungs and lymph nodes, but sometimes on the skin, in the heart, or eyes; the immune cells overreact to the inflammation.
Sarcoidosis can present in several ways, including cough, shortness of breath, skin rash, and joint pain but little is known about its cause, and it is difficult to diagnose, as it can mimic other conditions. What is known is that sarcoidosis often affects members of the Black community more severely than it does, those of other demographics.
How does sarcoidosis affect Black Americans?
Late comedian Bernie Mac – who battled lung sarcoidosis for 25 years – died from sarcoidosis-related pneumonia in 2008. Football star, Reggie White died from a cardiac arrhythmia related to sarcoidosis. Black patients with sarcoidosis tend to have an increased incidence of multiple organ sarcoidosis than their white counterparts. In Reggie White’s case, the athlete lived with both lung and cardiac sarcoidosis for years before his death in 2004.
But, Black women are not immune to the disease. Actress Tisha Campbell has been living with pulmonary sarcoidosis since 2001. According to data from the National Center for Health Statistics, Black women tend to experience higher rates of sarcoidosis, more hospitalizations, and more deaths than their white counterparts. The condition can also present on the skin, in bone marrow, in the lymph nodes, and even in the eyes.
While sarcoidosis-related deaths for Black men were three deaths per million, Black women experienced 10 deaths per million. These incidences are in stark contrast to the sarcoidosis mortality rate of their white counterparts; at most, they include one death per million among both white men and women.
Why we need more Black Americans in sarcoidosis clinical trials
These statistics highlight the urgent need for Black representation in clinical trials. Of course, socioeconomic concerns, medical mistrust, and delayed care within the Black community also play a role in the increased incidence of sarcoidosis among Black and African American patients.
Diverse representation in clinical trial research is imperative to improve health outcomes for those battling conditions like sarcoidosis. The latest phase of the FSR initiative is poised to create systemic change, with its multifaceted approach involving clinicians, stakeholders, and patient advocacy organizations to address barriers to care and improve access to clinical trials within the Black community.
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“Without diverse representation, clinical research risks neglecting vital insights and life-saving treatments for those who need them most.” Mary McGowan, Chief Executive Officer of FSR, explained.
“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.”
Based on findings from both the FSR Ignore No More campaign and Institutional Review Board (IRB) surveys, the coalition will connect organizations and individuals committed to addressing barriers to clinical trial diversity and implementing solutions to improve access to trials. Its focus will be to ensure equitable access to clinical trials through employer engagement as well as facilitating patient education and a concerted effort to assuage medical mistrust, a common barrier to Black clinical trial enrollment efforts.
To learn more about clinical trials for Black folks, discover our Clinical Trials Resource Center.
