The Ignore No More: ACTe Now! Campaign to address vast health disparities by seeking more inclusive approach to recruiting Black American patients for clinical trials and research
CHICAGO — The Foundation for Sarcoidosis Research (FSR) is proud to announce the launch of the Ignore No More: ACTe Now! (Advance Clinical Trials for Equity in Sarcoidosis) campaign. The goals of this campaign are to increase representation of Black American sarcoidosis patients in clinical trials, raise awareness of disparities that exist in sarcoidosis, identify the challenges and barriers that contribute to lower participation by Black Americans in clinical trials, and to provide recommendations that foster a more inclusive approach to recruiting patients for clinical trials and research.
The time to ACTe is Now! Learn what you can do to support at www.stopsarcoidosis.org/ACTNow.
To ensure Black American sarcoidosis patients are at the forefront of this discussion, FSR collaborated with sarcoidosis experts and patients, known as Patient and Clinical Advisory Committees, to create a survey to provide a platform for Black Americans to share their experiences and insights. Black Americans at least 18 years of age and older, who live in the U.S., are encouraged to take the survey at www.stopsarcoidosis.org/ACTNow to help inform recommendations for improving care and increasing representation in clinical trials. The survey is available now through November 30, 2022, and will culminate in a Congressional Briefing in April of 2023, Sarcoidosis Awareness Month.
Black Americans are 2.5 times more likely to have sarcoidosis and are 12 times more likely to die from sarcoidosis than White Americans. While Black Americans are disproportionately impacted by chronic illnesses and diseases across the spectrum, they are significantly underrepresented in clinical trials and research. According to the FDA, only 7% of clinical trial participants, globally, and 16% domestically, are Black, while White participants represent 76% and 78% respectively.
“It is imperative to increase representation of Black Americans in clinical trials and research efforts in order to close the gap in care and improve patient outcomes for Black Americans with sarcoidosis,” said Mary McGowan, Chief Executive Officer for FSR. “Ignore No More: ACTe Now! will focus on identifying the barriers and growing representation of Black Americans in clinical trials to provide more comprehensive data on their experiences, leading to more effective protocols, treatments, and equitable outcomes. We believe the learnings from this survey will lead to increased enrollment of Black Americans in clinical trials for sarcoidosis, as well as other chronic illnesses more broadly.”
In 2021, FSR launched Phase I of the Ignore No More Campaign to raise awareness of the disproportionate impact sarcoidosis has on Black American women reaching over 500,000 individuals through awareness events, media, and an educational public service announcement video featuring celebrity spokesperson, Jeryl Prescott Gallien. The campaign was featured in media outlets such as The Roland Martin Show, The Tavis Smiley Show, USA Today and Yahoo! News. Phase II, ACTe Now!, sponsored by Boehringer Ingelheim, Kinevant Sciences, Mallinckrodt Pharmaceuticals, and Chan Zuckerberg Initiative, is the next step in addressing health disparities in the sarcoidosis community, including Black American men.
We are calling on all patients, caregivers, clinicians, researchers, and the wider community to support this campaign and raise awareness of the survey. The FSR ACTe Now! Social Media Toolkit and educational infographic are located on the campaign website to make sharing messaging easy. FSR is also calling all providers, researchers, and clinicians to commit to having discussions with your patients about clinical trials and research participation.
There are more sarcoidosis clinical trials than ever before, so the time to ACTe is Now! Learn what you can do to support at www.stopsarcoidosis.org/ACTNow.
About Sarcoidosis
Sarcoidosis is a rare inflammatory disease characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. Despite increasing advances in research, sarcoidosis remains difficult to diagnose with limited treatment options and no known cure. Approximately 175,000 people live with sarcoidosis in the United States.
While Black American women experience the worse outcomes, as a group, Black Americans in general have a higher incidence of sarcoidosis and have poorer outcomes and experiences compared to other groups, have a hospitalization rate nine times higher than White Americans, and are twelve times more likely to die from sarcoidosis and at a younger age than White Americans.
About the Foundation for Sarcoidosis Research
The Foundation for Sarcoidosis Research (FSR) is the leading international organization dedicated to finding a cure for sarcoidosis and to improving care for sarcoidosis patients through research, education, and support. Since its establishment in 2000, FSR has fostered over $6 million in sarcoidosis-specific research efforts. For more information about FSR and to join our community, visit: stopsarcoidosis.org.
SOURCE Foundation for Sarcoidosis Research
Rod Washington: Rod is a blogger, writer, filmmaker, photographer, daydreamer who likes to cook. Rod produces and directs the web series, CUPIC: Diary of an Investigator. He also produces news and documentary video projects. Check out his podcast StoriesThisMoment at https://m3e.d71.myftpupload.com/stm-tncn-podcasts/
