Sarcoidosis expert shares that one of her early patients had the rare disease and it was this young African American woman who inspired her to focus on treating the condition.
In this interview, expert Ogugua Obi, MD, MPH, MSc, doesn't just explain that sarcoidosis is a chronic inflammatory disease that's characterized by the formation of tiny clumps of cells known as granulomas, or that less than 200,000 people are diagnosed per year in the US classifying it as a rare disease.
She also gave insight on the racial and gender disparities associated with the condition and shared her own personal experiences with patients who inspired her throughout her career.
Obi is a pulmonary and critical care physician and the director of the Sarcoidosis Center of Excellence at East Carolina University (ECU) where she also teaches medicine. Additionally, Obi serves on the Women of Color Clinical Committee and the Scientific Advisory Board of the Foundation for Sarcoidosis Research (FSR).
Aside from managing their care and symptoms while living with this chronic disease, patients with sarcoidosis face substantial barriers, specifically African American women.
Sarcoidosis affects African Americans 3 times as much as it affects Caucasians. Beyond that, African American women are 1.5 times more likely to be affected by it than African American men.
"They tend to have more severe disease, they tend to have more organ involvement, they tend to have more advanced and more chronic disease" Obi said. "So, by and large, African American women have a very significant burden of this disease."
The challenges that patients face when seeking care are significantly more pronounced for African American women with sarcoidosis because of 3 factors: racial, gender, and socioeconomic barriers. Obi broke down each aspect, detailing why it's important for providers to extend extra compassion and patience.
She explained that the impact of these barriers are backed by research. In the US, more than 50% of a patient's disease outcome is based on their zipcode, or socioeconomic status.
Biases, both implicit and explicit play a significant role in the provider patient relationship she said, with biases coming from both sides.
"If you don't trust your physician, if you don't feel like your physician is listening to you or hearing you," Obi explained, "you're less likely to make appointments, you're also less likely to be adherent to the medications or to whatever the treatment plan is."
Studies have also shown that women patients are treated differently than men, according to Obi.
"This barrier is magnified multiple times over for African American women," she said. "So certainly, this population faces a lot of barriers to their care."
The Foundation for Sarcoidosis Research launched a campaign, Ignore No More, to work with professionals like Obi to address the disproportionate burden placed on African American women living with sarcoidosis.
"The Foundation for Sarcoidosis Research (FSR) launched the Ignore No More: African American Women & Sarcoidosis (AAWS) Campaign to address these disparities by engaging our sarcoidosis community – patients and providers – to better understand how sarcoidosis impacts African American women."