From Sandy West, Kaiser Health News
When Emily Brown stood in a pantry looking for options, she felt alone. Until then, she had never had financial problems. But there she was, desperate to find safe food for her little daughter with food allergies. What she found was a glass of salsa and a couple of potatoes.
“That was all that was available,” said Brown, who lives in Kansas City, Kansas. “It was just a desperate place.”
When she became a parent, Brown quit her job due to a lack of childcare to make up for her daughter’s allergies to peanuts, tree nuts, milk, eggs, wheat, and soy. When she and her husband turned to a federal nutritional aid program, they found few acceptable allergy substitutions. The closest allergy support group she could find was an hour away. She was almost always the only black mother and the only poor mother there.
Brown called national food allergy advocacy organizations to ask for advice on helping poor families find safe food and medical resources, but was told that was not her focus. Support groups, fundraising and lobbying, as well as clinical and research work, were aimed at wealthier and white families. Advertisements rarely reflected families who looked like theirs. She felt invisible.
“Food allergies are an invisible disease in many ways. The burden of disease, the activities, and the energy it takes to avoid allergens are largely invisible to those who aren’t affected, “Brown said.” Black and other minority patients often lack voice and visibility in the health system, an invisible state, and they are in a truly vulnerable position. “
An estimated 6 million children in the United States have food allergies, 40% of them with more than one. Although limited research has been done on racial and class breakdowns, recent studies show that poor children and some groups of minority children are not only more likely to have food allergies than white children, but that their families are also having greater difficulty in receiving adequate and safe childcare Food, medical supplies and life saving medicine like adrenaline for them.
According to a study by Dr. Ruchi Gupta from 2020 at Northwestern University’s Feinberg School of Medicine, black children are 7% more likely to experience food allergies than white children. However, the study shows that Asian children are 24% more likely to suffer from food allergies than white children. But black and Hispanic children live disproportionately in poor communities, have asthma, and suffer from systemic racism in medical care.
And finding allergen-free foods to protect allergic children can be costly – both time-consuming and costly.
“Often times a mother will be open and say, ‘I have $ 20-40 to buy groceries for the week, and when I buy that groceries that you tell me to buy, I can’t mine feed the whole family. “said Dr. Carla Davis, director of the food allergy program at Houston Children’s Hospital in Houston.
“If you are diagnosed with a food allergy and you have no disposable income or time, there is no way you can change your diet to keep your child away from their allergen. “”
Fed up with the lack of support, Brown founded the advocacy group for the Food Equality Initiative in 2014. It provides an online marketplace for income-earning families in Kansas and Missouri who can order free allergy-free foods with a doctor’s note on allergy to meet their needs.
Nationwide, however, the needs of families far exceed what their group has to offer – and the problem has worsened in the face of the economic bottleneck of the COVID pandemic. Job losses and business closures have exacerbated barriers to finding and delivering nutritious food, according to a report by Feeding America, an association of food banks.
Brown said her organization more than doubled its clientele from March to August compared to the same period in 2019. And while it currently only serves Missouri and Kansas, the organization has had an increasing number of calls from all over the world since 2000 Land accepted The pandemic began.
For low-income minorities who live disproportionately in food deserts, fresh and allergy-friendly foods can be particularly expensive and difficult to find at the best of times.
Nutrition programs are heavily weighted on prepackaged and processed foods, which often contain the very ingredients that are problematic. Black children are more likely to be allergic to wheat and soy than white children, according to a 2016 study, and both black and Hispanic children are more likely to be allergic to corn, shellfish, and fish.
Some programs allow only a few allergy substitutions. For example, the federal government’s special dietary supplement program for women, infants and children only allows canned beans as a substitute for peanut butter. While beans are nutritionally similar, they are not that easy to wrap up for a child’s lunch. Brown wonders why WIC doesn’t allow seed butters like sunflower butter instead. She said they are nutritionally and functionally similar and are offered as allergy substitution in other food programs.
According to a 2016 study by Gupta, low-income households pay more than twice as much as higher-income families for the emergency medical care their children receive for their allergies. Children often come to hospital in greater distress because they lack safe food and allergy medication – and because asthma, which disproportionately affects Black and Puerto Rican children and low-income communities, makes allergic reactions difficult.
“So it’s like a double blow in these vulnerable populations, and we’re seeing that reflected in the data,” said Dr. Lakiea Wright-Bello, Medical Director, Specialty Diagnostics at Thermo Fisher Scientific and Allergist at Brigham and Women’s Hospital In Boston.
Thomas and Dina Silvera, who are Black and Latinx, experienced this horror firsthand. After their 3-year-old son Elijah-Alavi died of a milk allergy while feeding a grilled cheese instead of his allergen-free meal in his preschool, they set up the Elijah-Alavi Foundation to address the lack of information on food allergies and the critical ones Lack of culturally sensitive medical care in low-income communities.
“We started it for a reason, not because we wanted to, but because we had to,” said Thomas Silvera. “Our primary focus is making this information available to underserved communities – especially color communities – for free.”
More recently, other stakeholders, including Food Allergy Research & Education, a national advocacy group, have also begun to focus their attention on the lack of access and support in poor and minority communities. When Lisa Gable, who is white, took over the group known as FARE in 2018, she began to diversify the organization internally and make it more inclusive.
“There wasn’t a big tent when I walked in the door,” said Gable. “We have focused on finding partners and relationships that will allow us to diversify the people working in the community because it has not been a diverse community. “
FARE has funded research into the cost of food allergies. In addition, the company is expanding its patient registry, where research data is collected, and its clinical network of medical facilities to include more diverse communities.
Gupta is now leading one of the first National Institutes of Health-funded studies to study food allergies in children by race and ethnicity. It covers all aspects of food allergies, including family life, management, access to care, and genetics.
“This is a big deal,” said Gupta. “Because if we really want to improve the management, care and understanding of food allergies, we really need to understand how this affects different groups. And that has not been done yet.”
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Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation that is not affiliated with Kaiser Permanente.