FARE, in partnership with McKinsey & Company and Global Strategy Group, found that one of the greatest barriers to food allergy resources is cost. According to the research, food-allergic individuals spend 5% more than the average consumer, and often times food-allergy consumers face burdens accessing the foods they need.
The financial burden extends to the costs incurred for food allergy-related hospital visits, which are 2.5x times greater for children from low-income households compared to higher-income families.
"These families must face all the typical challenges of raising a child with food allergy without the security of life-saving epinephrine and access to food that is safe for them to eat," said FARE.
This inequity impacts crucial rates of diagnosis of food allergy, said FARE. Recent studies suggest that rates of official diagnosis of food allergy are 87% lower among a Medicaid population, disproportionately affecting Black and Latino Americans, who are around twice as likely as white Americans to be covered by Medicaid (Kaiser Family Foundation, 2019), stated FARE.
Additionally, Black Americans are 8% and Hispanic Americans are 22% more likely than white Americans to not have any health insurance and therefore, not have access to any basic food allergy care and treatment, a 2017 study found.
'Blueprint for Access': 'We must and will step up our efforts'
In 2020, FARE began laying the groundwork for a path forward that would prioritize and address these issues in access to food allergy care and resources, and developed its Equity Equals Excellence – A Blueprint for Access action plan released late last week.
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.
“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.”
At its core, the Blueprint encourages FARE and other patient advocacy organizations to expand DEIA initiatives to better serve individuals and BIPOC families, as well as individuals and families with lower incomes by ensuring their needs are represented and met.
Among the planned initiatives -- which include broadening community engagement and building diverse pipeline of leadership in the healthcare field -- FARE will be focused on diversifying its FARE Patient Registry to increase representation of Black and Latino patients.
"This will help ensure that the results of clinical trials are more broadly applicable to all members of the food allergy community and will ultimately make new, safe and effective therapies more acceptable and accessible as they are approved," the advocacy organization stated.
One way FARE is helping to close the food allergy healthcare access gap is by establishing a two-year, $100,000 fellowship program designed to provide mentorship and financial support to Black and Latino graduate student investigators evaluating socioeconomic factors impacting healthcare access for food allergy patients.
In turn, the fellowship members will leverage and enhance the FARE Patient Registry through the diversity of their research participants.
Legislation in the works
The Blueprint document also includes a plan for introducing new legislation which is designed to expand access to affordable and life-saving allergy testing, which are not covered by all Medicare and Medicaid policies, said FARE, who added that it will work closely with the Congressional Black Caucus, the Congressional Hispanic Caucus and the Congressional Asian, and Pacific American Caucus to lobby Congress.
“The challenge before us is clear,” said Anita Roach, MS, vice president of health innovation strategies at 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.”