The Social and Financial Impact of Special Diets in those with Food Insecurity
The Social and Financial Impact of Special Diets in those with Food Insecurity
At Ajinomoto Cambrooke, we understand the growing burden of food insecurity for those with medical conditions that require special diets. Wendy Gordon Pake, founder, president, and volunteer director of FOODiversity has shared a guest blog post regarding her personal experience and mission to lessen the burden of food insecurity for these individuals through FOODiversity.
We also know that the recent formula recall has had a tremendous impact on families and their access to formula. If you are struggling with access to your child’s formula, we recommend reaching out to your healthcare team to discuss alternative options. You can also reach out to Cambrooke with questions about our formula offerings at nutritionsupport@cambrooke.com
FOODiversity: One Mother and Advocate’s Journey
For many families, food symbolizes the sharing of traditions, the offer of comfort, and the shaping of personal identity. When mothers, fathers, or other caregivers are unable to lovingly feed their families, food insecurity has an impact much greater than inadequate nutrition.
A Growing Need
Especially in the wake of COVID-19, long lines at food pantries and soup kitchens are commonplace. I want to share a story that hit close to my heart, especially as a mom.
There is a mother of three children; one child with many food allergies and two children who are able to eat most any food.
It’s the middle of the month and this mom’s checking account balance is right above zero. And to make matters worse, she is not getting paid again for another two weeks.
She wonders how she will get dinner on the table for the remainder of the month, for herself and for her three babies.
The mom describes her visit to the food pantry with a mix of gratitude, for the hard-working and kind staff and volunteers, and shame, for needing the pantry to keep her family fed.
The mom approaches the front of the line and receives her box of food. She arrives home and opens the box, to find that there’s only food for two of her three little ones. Nothing in the food box is safe for her child with food allergies.
This is the type of story that inspired the work of FOODiversity.
As Executive Director of FOODiversity, my primary work includes:
- Raising awareness
- Providing educational and financial support
- Increasing access
The risk of hunger is real. And, from my experiences, I know firsthand how hard it can be, when all you want is food for your baby.
25 Years Ago – My Experience
Like the mother of 3 at the food pantry, I am Mom to one child with multiple food allergies and one child with no food restrictions.
My children are grown, well into their careers, and wonderfully moving forward in their adult lives.
25 years ago, when my older son was an infant, I was struggling.
25 years ago, food manufacturers were not allergy-aware. You didn’t see food packages that avowed “dairy-free,” “nut-free,” “egg-free,” or “gluten-free.” Labeling laws did not address allergens; ingredients labels were haphazard, and scientific names (e.g. casein, albumen) were used within ingredients lists without identifying, for example, milk and egg with the use of their common names.
25 years ago, there was no such thing as “Google search,” social media, or online support groups. The limited medical research was inconclusive; in fact, many of the medical recommendations then were the exact opposite of the pediatric food allergy guidance today.
25 years ago, I was having a difficult time feeding my child. My child was sick, and I didn’t know where to turn. Within our circle of family and friends, we were the only family that anyone knew who had food allergies.
In summary, 25 years ago, we had no medical guidance, no support system, no foods that we could trust, and no easily accessible education or information. We had to travel hours away to a research hospital just to gain access to ideas that are commonplace now.
We experimented with many different formulas and found one that my son could digest; I was thankful that he was finally getting the nutrients necessary for his development and growth. The downside was the inconvenience; we could only get this particular formula at one grocery store, and not the store closest to our home.
I remember one occasion where the cashier was ringing up my items and I heard her say, “wait, wait, I think that rang up wrong.” I awoke from my daydream, “sorry, I missed what you said,” to which she replied, “this is so expensive, this can’t be the cost of the formula.” I said “yes, that’s the cost.” This was my experience 25 years ago and this is still a reality, today, for those paying out of pocket for hypoallergenic formulas.
This story illustrates some of the barriers to access:
- the expense of allergy-safe food and specialty formulas
- limited availability of specialty items
- limited internet access to search for products and other information
- limited time and transportation
that can prevent families from obtaining the medically-necessary foods they need.
Eventually, our family’s situation got easier to navigate – information was easier to access – both medical and in the form of general support.
A Community in Need
Fast forward to June 2020: I signed up for a webinar sponsored by Food Equality Initiative (FEI) called “A Conversation on Race and Food Allergies.” I immediately knew that there is a crisis, a critical need.
The presenters pointed out that, since food avoidance is the ONLY treatment for food allergies or celiac disease, if a person doesn’t know how to identify foods that are safe, or cannot afford or locate these products, access to food and education are unmet medical needs.
To me, this sounded like 25 years ago!
If a person does not have access to nutritious and affordable alternatives for restricted foods in order to stay healthy and out of the emergency room or hospital, this leads to an increase (in this case, more than double) of visits to the emergency room for those in low-income populations.
The presenters in the webinar described how food allergy disparities disproportionally affect communities of color and continue to drive poor health outcomes.
Throughout the webinar, I was absorbed in thoughts of how NO mother should have to go through what my family went through – the sickness, the isolation! I realized my own access at the time of the expensive baby formula, and I feel distressed that not everyone has this access.
The presenters discussed issues around race. As I was then, I’m still very much a learner in that space; however, where I am an expert is in food allergy.
My takeaway from the webinar was the overarching fact that this is a health equity issue. The root cause of hunger is economic, and historical challenges continue to make it systemically difficult for some to succeed.
The struggle is a chronic medical condition that puts people deeper and deeper into food insecurity and keeps them in crisis mode.
While generalized emergency food assistance is the chance for many to emerge from food insecurity, individuals and families with food allergies, and other diseases, who are also challenged with food insecurity, do not escape the avalanche of crises, until they have a consistent and reliable source of safe food.
This tremendous gap was my call to action to help literally a national community of people who are present in every community. How could I combine my desire to learn more about this need with my knowledge from my family’s experience with food allergy?
I went to the frontline – the food pantries, soup kitchens, schools, backpack weekend meal programs and healthcare systems (now all FOODiversity clients)
- Raising awareness and shining a light on health disparities; for some, following medical recommendations means going into debt, or facing significant consequences when having to take time off of work.
- Providing educational and financial support to increase patients’ abilities to comply with medical recommendations; access to education and support prevents hunger, medical emergencies, and hospitalizations.
- Increasing access; lessening the isolation of living with food allergy or celiac disease, lessening the time and costs required to comply with doctor’s orders, and lessening the burden of the significantly higher cost of “safe foods” that are free of allergens or gluten.
Let’s go back to the mom at the food pantry, who only got food for two of her three children, and see how her story could have changed with FOODiversity.
When FOODiversity’s mission is activated at a food pantry, this is how it looks:
- Signs invite guests to notify the staff if they have a dietary restriction
- Intake processes inquire about dietary restrictions
- Educational flyers are on display, with lists of resources for families who are managing food allergies.
One of the goals of FOODiversity is to remove the shame of having to ask. By initiating the conversation about diet restrictions and by sharing the challenges others face, we replace shame and isolation with inclusion and safety.
While most pantries are not able to control which foods are donated to line their shelves, FOODiversity provides guidelines to pantries about how to store, display, and distribute allergy-friendly products. Hopefully, with this collaboration, the mom in the story, and others in need, will not go home empty-handed.
Truly navigating toward food security requires consistent and reliable sources of the medically-prescribed foods. A solution that FOODiversity often proposes, and subsequently funds, is Food Equality Initiative (FEI)’s direct-to-door grocery delivery service.
FOODiversity works hard to raise funds that will allow safe foods, educational materials, and other support to reach those in need: the guests at food pantries, the many patients of healthcare systems and clinics, and the students in college or in the free/reduced lunch program. Without this medically-necessary food and information, a Mom can’t feed her child, a Mom is stressed and afraid; and it takes bravery to ask for help.
Donations to FOODiversity may be placed online at https://foodiversity.org/
How Cambrooke can Support Those Looking for a More Affordable Hypoallergenic Formula
At Cambrooke we know the financial burden associated GI and allergic medical conditions can be overwhelming. The increased costs of specialty foods and formulas can lead to an inability to adhere to medical recommendations. Cambrooke developed EquaCare Jr. as a more affordable option for junior hypoallergenic amino acid-based formulas. Compared to other nutritionally complete junior elemental formulas, EquaCare Jr. costs 25% less. It provides a safe nutritional option for those with food allergies and/or gastrointestinal conditions. Click here to learn more about how EquaCare Jr. may help support your child.
If you would like to explore potential insurance coverage options for your family, please contact our CambrookeCare program. Our internal team will determine if coverage exists and who can supply formula, if so.
For more information:
Donations to FOODiversity may be placed online at https://foodiversity.org/
FOODiversity website: https://foodiversity.org/
FOODiversity Social Media:
Facebook: bit.ly/FOODiversity
LinkedIn: bit.ly/FDLinked
Twitter: (FOODiversity) bit.ly/FOODiversityOrg (Carolina FOODiversity) bit.ly/FOODiversityTweets
Food Resources:
Food Equality Initiative https://foodequalityinitiative.org/
GIG Cares: https://www.gigcares.org/
Education and Support Resources:
Allergy & Asthma Network https://allergyasthmanetwork.org/
Backstop: Care, Coaching, Community https://getbackstop.com/
Center for Food Allergy and Asthma Research https://www.feinberg.northwestern.edu/sites/cfaar/
Food Allergy Research & Education (FARE): https://www.foodallergy.org/
Food Allergy & Anaphylaxis Connection Team: https://www.foodallergyawareness.org/
Kids with Food Allergies (a division of AAFA): https://www.kidswithfoodallergies.org/
Gluten Intolerance Group: https://gluten.org/resources/
GI Kids: https://gikids.org/
American Partnership for Eosinophilic Disorders https://apfed.org/
International FPIES Foundation: https://www.fpies.org/
The FPIES Foundation: https://fpiesfoundation.org/
About FOODiversity
Founded in 2020, FOODiversity is headquartered in Mooresville, North Carolina, and serves clients across the country. The 501(c)(3) nonprofit also collaborates with dedicated partners to serve populations worldwide. Established to lessen the burden of food insecurity for individuals and families with food allergy, celiac disease, or other food intolerances, FOODiversity is currently led by Wendy Gordon Pake. The FOODiversity mission is to prevent hunger, medical emergencies, and hospitalizations by raising awareness, providing educational and financial support, and increasing access.
Wendy Gordon Pake, Executive Director
Email: wpake@carolinafoodiversity.org
LinkedIn: https://www.linkedin.com/in/wendy-gordon-pake
