Ilana Golant's daughter was only 13 months old when the terrifying symptoms arose on a Sunday afternoon. Her eyes swelled shut. Her body broke out in hives. She began projectile vomiting. It was the first time her daughter had an anaphylactic reaction. In the months and years to come, Golant and her husband would learn that their daughter had not one, but multiple food allergies — and they were life-threatening.
In her journey to learn more about supporting her daughter's health, Golant’s eyes opened to the array of challenges in the food allergy domain. The lawyer and public relations expert became a health activist, founding the Food Allergy Fund. Today, she is the CEO of the organization — a nonprofit committed to funding food allergy research, hosting thought leadership summits and accelerating innovation to find effective solutions to improve lives.
The Fund is taking on the most daunting challenges in food allergy care and research, including these seven:
1. Food allergies are much more common than you might think
One in 13 children in the United States and one in 10 adults globally has a food allergy. Because those statistics are a decade old, Golant noted, the numbers may be much higher, not to mention people who have not been diagnosed. Among children with food allergies, nearly half of them are allergic to more than four foods. Food allergies in children increased 50 percent between 1997 and 2011. And every three minutes, someone goes to the emergency room because of an allergic reaction to food.
2. Food allergies and food sensitivities are not the same thing
Food allergy reactions are triggered when the body thinks a food is a pathogen and mounts an immune response against it. "Food allergies are an autoimmune disease, not a lifestyle choice," Golant explained. "They are not the product of a poor diet or helicopter parenting or many of the myths that I often hear, which are really frustrating for us as parents."
Some food allergies cause uncomfortable symptoms, but others can provoke a life-threatening anaphylactic reaction that requires immediate treatment with epinephrine. Food sensitivities such as lactose intolerance can cause painful bloating and other digestive symptoms, but they are not fatal.
3. Food allergies are difficult to diagnose
Blood and skin tests for allergies are highly flawed. "There's a very high false-positive and false-negative rate, as much as 40 to 50 percent on either side, which makes them very hard to diagnose," said Golant.
The gold standard is a food challenge, which means going to an allergist's office, consuming small amounts of food and being monitored over a five- to six-hour period. "At the end, you either tolerate the food or you don't, or you need to stop mid-challenge," she added. "It's also very difficult to get a child to go to a doctor's office for six hours to try food they've been told to avoid. It is psychologically very difficult to manage, both for the child and family."
4. Food allergies may have their roots in the microbiome
The microbiome has received considerable attention in recent years regarding its effects on health and disease, and food allergies are no exception. "There are theories around the microbiome going haywire. What has altered the gut? Is it food manufacturing? Is it the rise of C-sections? Is it the increase in antibiotic use, especially in early childhood?" Golant questioned. "And then there are various theories that the microbiome is basically set for life by age 8, 10, 12. So as you become an adult, you can still shape the gut, but it becomes more difficult."
5. Food allergy research is underfunded
Even though food allergies are increasing in prevalence, food allergy research is not sufficiently funded. "Generally, allergy and infectious diseases have been on a downward trajectory in terms of NIH funding, even though the patient population has skyrocketed," Golant noted.
The Food Allergy Fund plays a vital role in preclinical early-stage seed funding for investigators at academic research institutions. "Getting seed funding is critically important for food allergy research. We're really proud to play a role in accelerating research," she continued.
Examples of ongoing investigations supported by the Food Allergy Fund include:
A phase 2 study at Boston Children's Hospital assessing oral-fecal microbiota transplantation in teens with peanut allergy.
Research at the University of Chicago to develop an "inverse" vaccine that targets the immune system to enable food-allergic individuals to tolerate food allergens.
A project by scientists at Children's Hospital of Philadelphia and the University of Pennsylvania to create a T-cell based platform to speed the diagnosis of food allergies and also monitor the response to oral immunotherapy.
6. Food allergy care is very expensive
Food allergy care costs American families $25 billion annually. Golant explained that insurance may not always cover diagnostic testing or treatment. "The economic impact on families who don't have the resources to get diagnosed, let alone treat the condition, is staggering," she asserted, adding that some parents drop out of the workforce to manage their children's health.
7. Food allergies affect more than just the body
Food allergies are considered a disability under the Americans with Disabilities Act. Even so, it is not unusual for children with food allergies to be bullied. Adults living with these conditions may also feel unsupported by family and peers.
"Anxiety is very prevalent in food-allergic kids and can be debilitating," said Golant. "Children don't want to talk about it. They're embarrassed by it. So how do you empower your child? Teaching them to self-advocate from a really young age is critically important. If they can learn to advocate for themselves, others will take it seriously as well."