Erica Courtenay-Mann avoided talking about her sarcoidosis — an inflammatory disease that impacts one or more organs throughout one’s body — after she received her first diagnosis. She didn’t quite know what to say because she couldn’t find much information about it.
She did learn, though, that Black American women with sarcoidosis like her experience worse outcomes than Black men and white people. However, Black Americans make up a small portion of clinical trial and research participants.
Courtenay-Mann, now a sarcoidosis patient advocate, stopped keeping quiet about the disease and her experience once it came back after five years in remission.
“Now I can actually be a beacon of knowledge and help other people,” Courtenay-Mann said.
More on this topic‘I don’t look like what I’ve been through’: Rare disease sarcoidosis burdens Black women
She considers herself one of the lucky ones. She lives a great life, she said, but many Black women with sarcoidosis face grimmer outcomes. Like her, the Foundation for Sarcoidosis Research believes further research and knowledge-sharing can allow others living with sarcoidosis to face the same fate.
The nonprofit launched a survey as part of its Ignore No More campaign, their first-ever research equity initiative. The team wants to uncover what prevents Black Americans from participating in clinical trials necessary to explore treatments for sarcoidosis, and use survey findings to increase equity in research.
Sarcoidosis is a rare disease; about 175,000 people in the U.S. live with it, according to the Foundation. However, Black Americans are 2.5 times more likely to have the disease and 12 times more likely to die from it than white Americans. Still, Black people make up only 7% of all chronic illness clinical trial participants globally, according to the FDA.
“We believe strongly that if we can gain a better understanding of sarcoidosis as a rare disease, from the community that, unfortunately, has the highest prevalence and worst outcomes of the disease, that will help all people living with sarcoidosis,” said Mary McGowan, CEO of the Foundation for Sarcoidosis Research.
The survey questions Black Americans’ experiences with or knowledge of sarcoidosis research and clinical trials. The team behind the survey plans to follow up the questionnaire with patient focus groups and workshops with key opinion leaders.
The Foundation plans to present their findings to Congress in April “to bring awareness and take action steps at the national level” to better represent Black Americans in sarcoidosis research, McGowan said. She and Courtenay-Mann hope this deeper understanding helps develop a roadmap to address disparate outcomes for historically marginalized people with all chronic diseases.
“I believe that clinical trials are a pathway to progress, so if we can fix the lack of inclusivity and have those potential breakthroughs it reduces this equity gap in the findings for all the groups,” Courtenay-Mann said.
Black Americans who live with sarcoidosis can complete the survey by Nov. 30. To complete it and read more about the disease’s impacts on Black Americans, visit stopsarcoidosis.org/ACTNow.
Sammy Gibbons is a culture reporter for the USA TODAY Network’s Atlantic Region How We Live team. Email: sgibbons@gannett.com; Twitter: @sammykgibbons
