The Foundation for Sarcoidosis Research (FSR) is excited to announce the official launch of the first of its kind African American Women & Sarcoidosis National Campaign (AAWS).
African American women experience the highest incidence of sarcoidosis in the US as compared to any other group. Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. African American women are 3 times more likely to develop sarcoidosis when compared to Caucasians. They are also more likely to experience chronic and severe symptoms leading to hospitalization rates 18 times higher than Caucasian men, 10 times higher than Caucasian women and more than double that of African American men. Additionally, their sarcoidosis-related mortality rate is 13 times higher than that of Caucasians and 1.5 times higher than that of African American men. Thanks to the generous support of our sponsors, Global Genes and Mallinckrodt Pharmaceuticals, FSR will raise awareness of how these significant disparities are relevant to the diagnosis and management of sarcoidosis as it impacts African American women.
“Raising awareness of sarcoidosis’ prevalence and identifying barriers to care experienced by African American women are critical steps toward improved diagnosis, treatment, and support for all African American women living with this complex condition,” says Mary McGowan, CEO of The Foundation for Sarcoidosis Research. “A one-size-fits-all approach to treating and managing is insufficient. We must explore new and innovative approaches that address these disparities head-on. Our hope is through this campaign, we provide patients, their communities, and their providers with the necessary tools to engage in open dialogues about sarcoidosis symptoms, progression, and disease management that lead to better outcomes.”
As part of the AAWS campaign, FSR developed a Women of Color Patient Advisory Committee (WOC PAC), comprised of 15 African American women from across the US. WOC PAC members are both sarcoidosis patients and care partners, whose diverse lived experiences capture differences in age (33-72 years), regional representation (10 states), and sarcoidosis manifestations (11 manifestations). These women will be at the forefront of this critical initiative, engaging in media interviews and sharing their own stories on the public stage to empower others. 2021 Women of Color Patient Committee Members are: Cheryl Bradford, Erica Courtenay Mann, Garrie Farrow, Jonette Harper, Brenda Harris, Marsha Henderson, Gloria McDaniel, Mary Oldham, Chasta Posey, Jessica Propps, Jessica Reid, Ora Riley, C. Ann Scott, Rhonda Underhill, and Kathryn Washington. Using their lived experiences and armed with the tools and education provided by FSR, this committee will be essential in creating and disseminating educational materials and messaging that resonate with African Americans.
The creation of a Women of Color Clinical Advisory Committee (WOC CAC) ensures a clinical perspective is included in the planning and execution of this campaign. The WOC CAC is comprised of four practicing clinicians and an epidemiologist to bring a wealth of clinical experience and rich data specific to African American Women and sarcoidosis. Esteemed committee members are: Divya Patel, DO of University of Florida Department of Medicine; Ogugua Obi, MD, MPH, MSc of East Carolina University; Yvette Cozier, DSc of Boston University; and W. Ennis James, MD of Medical University of South Carolina.
FSR will partner with numerous health and community-based organizations and clinical centers to produce various awareness activities beginning this Fall with a Twitter Chat sponsored by Mallinckrodt Pharmaceuticals and Global Genes Monday, October 25th from 11am-12pm CST. Dr Cozier and Dr. Obi will join FSR on Twitter to answer questions about sarcoidosis in African American women including symptoms, contributing factors, and what is being done to help improve care. To join the chat, users should follow @stopsarcoidosis on Twitter and post using the hashtags #Sarcoidosis, #IgnoreNoMore, and #AAWS.
In February 2022, Black History Month, FSR will launch a month-long social media campaign, providing an easy-to-use social media toolkit and educational resources to help raise awareness. An educational webinar will also be held in February 2022. An infographic providing detailed information on the prevalence of sarcoidosis in African American women is available to view on FSR’s web page dedicated to the AAWS campaign.
To learn more about FSR’s African American Women & Sarcoidosis Campaign, please visit https://www.stopsarcoidosis.org/aaws-campaign/ .
