(Stock Photo)

By Dr. Kaye Cole, Milton L. Brown, MD, PhD, and Michael Frazier

Racial inequity has long existed in healthcare, and food allergy – which impacts 85 million Americans – is no exception. Underrepresented and under-resourced communities have experienced significant health disparities relating to food allergy prevalence, diagnosis and access to treatment.

Blacks and Latinos suffer from this chronic disease at a higher rate than whites, are less likely to be included in important research and have less access to testing, care and other important life-saving resources.

Disadvantaged communities of color deserve stronger advocates and allies to address these inequities in patient care. We can build this 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 also needs to be a plan on which to act.

FARE (Food Allergy Research & Education), the world’s leading non-governmental organization engaged in food allergy advocacy and the largest private funder of food allergy research, has a plan and recently launched an unprecedented effort to ensure that underserved communities receive equitable treatment.

Last year, FARE Chief Executive Officer Lisa Gable and FARE Vice President of Health Innovation Strategies Anita Roach, MS, asked the three of us to co-chair a series of roundtable discussions with leading food allergy and racial equity experts. Our goal: create a blueprint to help guide us as we partner with Black, Indigenous and People of Color (BIPOC) and/or lower-income communities to ensure full representation in medical treatment, especially in the areas of clinical research and care.

Our objectives included identifying equitable and inclusive strategies to collaborate with communities and health providers to eliminate institutional barriers and address systemic racism. The process focused on creating a space for uncomfortable conversations about race and equity, identifying how much further we need to go to provide high-quality care for all patients, discussing human resource and talent-building practices, and supporting community engagement and more inclusive research.

We took the learnings from experts in DEIA (Diversity, Equity, Inclusion and Access) in other diseases to develop patient advocacy-driven solutions that will help FARE and other organizations navigate these issues and expand opportunities for underserved communities.

Following months of extensive and candid dialogue, we have created a framework, Equity Equals Excellence – A Blueprint for Access, which we released in February and are putting into action. It features a litany of actions and provides direction for more comprehensive patient advocacy and community engagement.

The Blueprint also recognizes the importance of building and retaining trust in these underserved communities and the plan identifies ways to accomplish this. Gaining the trust of Black and Latino communities is one of the biggest obstacles we face. For centuries they have been mistreated and misled, and as an unfortunate but logical result, they often refuse outside help or participate in clinical research. But with truth, transparency and engagement, we can move forward with understanding of the past.

The Blueprint also calls out the need to build a leadership pipeline in the healthcare field and to foster greater inclusion and representation in the food allergy community. This will certainly help reduce the inequities in food allergies, which are very clear. For example, while Blacks are almost 13 percent of the U.S. population, non-Hispanic African-American children are at a significantly elevated risk for food allergies, as compared to other groups, and Black and Latino children are at higher risks of adverse events, including hypersensitivity reactions such as dermatitis and higher rates of severe or life-threatening immune responses.

The Blueprint also provides for a path to create legislation that expands access to affordable, life-saving allergy testing.

Beyond the scope of this Blueprint, we believe our nation can do far more to alleviate the growing problem of food allergies. This starts with more resources for research and innovation with the hopes of discovering new cures and therapies. Today, the federal government allocates only 19 cents per person each year on food allergy research.

There is also a need to address the serious problem of what are called “food deserts.” When families don’t have access to allergen free, healthy and affordable food, they either go without or eat whatever they can get their hands on. Oftentimes, this means foods that could send them straight to the emergency room or worse.

FARE and our partners acknowledge we have a lot of work ahead of us.

Now, with this Blueprint as our guide, we must come together as healthcare and community leaders, elected officials and patient advocates to engage the underserved, expand access to treatment and testing, and reverse the growth of this terrible life-threatening disease.

The Blueprint also needs the support of allies. We hope you will join us.

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Cole, Brown and Frazier are co-chairs of FARE’s DEIA Roundtable

Dr. Kaye Cole is a consultant and mental health clinician for the University of Iowa’s Department of Intercollegiate Athletics, part-time lecturer at the University of Iowa, and member of FARE’s Board of National Ambassadors.

Dr. Milton Brown is 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;

Michael Frazier is 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.

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