Defining and Managing Sarcoidosis in African American Patients

Sarcoidosis is a systemic inflammatory disease of unknown origin that is categorized by the formulation of granulomas in various parts of the body including the lungs, skin, heart, and brain.

Though the disease does not always require medication, careful monitoring and management is always recommended, as it may present in fatigue, pain, small fiber neuropathy and other comorbidities.

Sarcoidosis is reported to affect roughly 30,000 patients yearly with a majority of those cases originating from the African American community. The disease is 3 times more common in African Americans patients compared White patients, and presents more frequently in African American women.

Ogugua Obi, MD, MPH, MSc, Director of the Sarcoidosis Center of Excellence at ECU, Assistant Professor at ECU, and member of the Scientific Advisory Board of the Foundation of Sarcoidosis Research, spoke of the disparities associated with the disease, the challenges patients face, and how sarcoidosis – the “great mimicker” as some clinicians have described it- can be differentiated from other diseases.

“The socioeconomic barriers stem from the fact that African Americans, especially African American women, are more likely to be in lower socioeconomic or lower financial status in society,” Obi said. “This makes it very difficult for them to make appointments, to seek specialty care, and in a lot of cases to follow treatment regimens which may be complex or require multiple medication doses.”

Obi added that in the US, a patient’s disease outcome is largely dependent on where they live. However, there also exist explicit and implicit biases that both physicians and patients share that can influence patient care.

Providers may dismiss symptoms related to the disease, and the lack of attention and communication could result in hesitance from patients in seeking help. Additionally, previous research has shown that women patients are treated differently across all fields of medicine, which is a barrier to care that is magnified for African American women.

“Implicit biases, as well as I would say, to some extent, explicit biases (are systemic biases) that we have grown up with and that we have to become more self-aware of,” Obi said. “So, we can address them and at least understand where they are coming from when we deal with patients, especially patients who are socioeconomically disadvantaged.”

On the clinical side, Obi noted that proper care for sarcoidosis goes beyond knowing the challenges of the disease itself, it also included being aware of why some patients are not receiving the care they deserve.

Clinicians who want to advocate for better care for patients disproportionately affects by the disease can challenge the racial and sex-based barriers that keep patients from receiving proper medications or from being compliant with regimens that have been prescribed.

Of course, the other half of the struggle in managing sarcoidosis is properly diagnosing it. Being aware of the “constellation of symptoms”, utilizing radiographic findings, and tissue diagnosis function as “the 3 tenets” in accurately defining the disease.

“I think the one comforting thing is that the diagnosis becomes more secure with time,” Obi said. “So the more you see the patient and take care of that patient, the more comfortable you are, that you've made the appropriate diagnosis.”