Following the Principles of Diversity, Equity, Inclusion and Access (DEIA), Plan Aims to Expand Access to Testing and Care in Black, Latino and Indigenous Communities
Note: You can download the Blueprint document referred to in this press release by clicking here.
McLean, Va. (February 18, 2021) – FARE, the world’s leading non-governmental organization engaged in food allergy advocacy and the largest private funder of food allergy research, today released “Equity Equals Excellence – A Blueprint for Access,” which is designed to address systemic racial and economic inequity in patient care for diseases like food allergy by expanding access to treatment, research and trusted information in underrepresented communities.
“We must and we will step up our efforts to serve Black, Latino and Indigenous communities that suffer with these life-threatening food allergies,” said Lisa Gable, Chief Executive Officer of FARE. “While we’ve certainly made progress in recent years prioritizing DEIA, this new Blueprint provides a clear pathway on critical next steps and the investment needed to ensure that all communities are represented equitably and that their needs are fulfilled.”
The Blueprint is the culmination of FARE’s Roundtable Series on DEIA (Diversity, Equity, Inclusion and Access), which brought together leaders in food allergy and DEIA authorities in other disease areas and fields for in-depth discussions to identify obstacles to high-quality care and to find equitable solutions. Each of the group discussions was facilitated by Dr. Debra Joy Pérez, an expert in advancing organizational equity, inclusion and diversity. Chairing the distinguished group were: Dr. Milton Brown, Professor of Practice and Director of the Center for Drug Discovery for Rare Diseases at George Mason University, and a member of FARE’s Board of Directors; Dr. Kaye Cole, founder of The Cole Group and a member of FARE’s Board of National Ambassadors; and Michael Frazier, an equity and access advocate, and Vice President and Deputy Director for External Affairs at the 9/11 Memorial & Museum and a member of FARE’s Board of National Ambassadors.
Racial inequality has long existed in healthcare, and food allergy is no exception. Underrepresented and under-resourced communities experience significant health disparities relating to food allergy prevalence, diagnosis and treatment. In food allergy, research has shown that Black children are more likely to develop the disease than white children but are less likely to have access to an allergist or to epinephrine, the only effective medication that can halt severe symptoms during an allergic reaction. Further, children covered by Medicaid are much less likely to receive a doctor’s diagnosis of food allergy than other children in the U.S. overall.
The Blueprint encourages FARE and other patient advocacy organizations to expand DEIA initiatives to better serve individuals and families who are Black, Indigenous and People of Color (BIPOC), as well as all individuals and families with lower incomes by ensuring that underrepresented and under-resourced communities have seats at the table and that their needs are met.
“Historically marginalized communities in this country have long been unfairly denied access to their basic privileges and human rights,” said Dr. Cole. “Our goal here is to embrace and empower these communities with safe, brave spaces for accessing the resources that can enhance their quality of life as they cope with these allergies.”
In addition, the Blueprint lays outa variety of important steps, including strengthening patient advocacy, broadening community engagement, and building a much-needed diverse leadership pipeline in the healthcare field. The document also provides for a path to create legislation that expands access to affordable, life-saving allergy testing.
“These oppressed communities deserve stronger advocates and allies to address the inequities in patient care,” said Frazier. “We build advocacy in part through open, honest and sometimes difficult conversations about the lack of fair access and inclusivity in food allergy treatment, inspiring change. There is no cure for food allergies, but the Blueprint is a remedy for increasing equitable access to care and improving our overall healthcare system.”
Further, the Blueprint stresses the importance of building trust with Black, Latino, and Indigenous populations, whose trust has been eroded by a long history of harmful and unethical medical practices. This can be accomplished, among other ways, through candid conversations about the harmful impact of the disease and the potential beneficial impacts of the community’s participation in research, as well as any known risks.
“Gaining the trust of Black and Latino communities is one of the biggest obstacles we face,” said Dr. Brown. “For centuries, these communities have been mistreated and misled and, as such, they are very cautious and often refuse outside help. But I’m confident with truth and engagement we can overcome this.”
“The challenge before us is clear,” said Anita Roach, MS, Vice President of Health Innovation Strategies at FARE, who collaborated closely with Roundtable participants on behalf of FARE. “Using this Blueprint as our guide, we will work hand-in-hand with communities to ensure that every person regardless of color or economic status has the same opportunities to receive evidence-based health information delivered by trusted messengers and to engage in inclusive research studies that ensure no one is left out of future treatments, cures or prevention strategies for life-threatening diseases like food allergy.”
Putting the Blueprint recommendations into practice, FARE earlier this month launched a key equity initiative in Newark, N.J. FARE is partnering with the South Ward Promise Neighborhood to gather input from community members managing food allergies and to identify local priorities for food allergy awareness, training and support programs in this underserved area. Building on grassroots involvement and feedback, FARE will establish a self-sustaining framework for food allergy support and advocacy in the South Ward that can serve as a model for expanding food allergy services in other cities across the country.
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FARE is the world’s leading non-governmental organization engaged in food allergy advocacy and the largest private funder of food allergy research. Our mission is to improve the quality of life and health of the 85 million Americans with food allergies or food intolerances and their families, and to provide them hope through the promise of new treatments. FARE is transforming the future of food allergy through innovative initiatives that will lead to increased awareness, new and improved treatments and prevention strategies, effective policies and legislation and novel approaches to managing the disease. To learn more, visit our Living Teal™ YouTube channel or www.foodallergy.org.