Takeaways from the White House Conference on Hunger, Nutrition and Health, Let's Get Gluten Labeled!
- Jon Bari
- Oct 15, 2022
- 14 min read
Updated: Jul 11
It was an honor for my wife, Leslie, and me to have attended the White House Conference on Hunger, Health and Nutrition. We are grateful to have had the opportunity to share our lived experience about Celiac Disease, a potentially life-threatening food allergy, auto-immune disease and digestive disease, triggered by eating Gluten, and advocate for the labeling of Gluten as a Major Food Allergen on all packed foods in the U.S., just like it is in 85 other countries. Thank you to everyone involved in making the White House Conference a reality including Representative Jim McGovern (D, MA-2), the late Representative Jackie Walorski (R, IN-2), Senator Cory Booker (D, NJ), Senator Mike Braun (R, IN) and Ambassador Susan Rice.
"If a parent cannot feed a child, there's nothing else that matters for that parent. If you look at your child and you can't feed your child, what the hell else matters?" -- President Joe Biden
Unfortunately, President Biden's remarks ring true for us - "If you look at your child and you can't feed your child, what the hell else matters?" We have lived this food insecurity experience that President Biden spoke of in the absence of required labeling of Gluten as a Major Food Allergen, especially eating out of the house, and our son Jax getting violently ill after being glutened (accidentally ingesting Gluten).
When we saw Ambassador Susan Rice, Director of the Domestic Policy Council for the White House, Leslie and I were really touched that the first thing she did was ask about Jax's well-being and why Jax was not at the Conference (it was a school day - 4th Grade). I think that speaks to Jax's ability to share his lived experience with food insecurity, getting violently ill from being glutened, damage to his small intestine, failure to thrive, anemia, label reading, exclusion from life's daily activities that involve food, etc.
It was also great to meet FDA Commissioner Robert Califf, M.D. and share our lived experience with Celiac Disease and why the current voluntary labeling scheme for Gluten does not adequately protect Jax and 3.3 million American Celiacs. It was an honor to present Commissioner Califf with Jax's Celiac Journey challenge coin.
Having Lived Experiences Be Heard and Included in the Design of Equitable Policies
When Jimmieka Mills of Equitable Spaces introduced President Biden at the White House Conference and spoke from her heart of policy decisions that were not informed by those with lived experiences, when Jimmieka spoke about health and well-being that are impacted by food, when Jimmieka spoke about creating opportunities for those with lived experiences to be heard and included in the design of equitable policies, it hit so close to home! We are hopeful that this lived experience framework being heard and included in the design of equitable public policy will also help inform the Whole-of-Government approach that President Biden referenced in his White House Conference speech, including with ending the Federal government's apathy to the consumer protection needs of the Celiac community.
We are not alone; this past summer we helped to generate 1,576 comments from the Celiac community to the FDA on the need for the equitable evaluation of the public health importance of labeling Gluten as a Major Food Allergen. In total, there were 1,903 Comments to the FDA's Draft Guidance of which 1,576 comments (82.8% of all comments) mentioned Celiac and/or Gluten as a food allergen.
National Strategy on Hunger, Nutrition and Healthy Excluded Celiac Disease & Food Allergies
The Biden-Harris National Strategy on Hunger, Nutrition and Health excluded Celiac Disease & food allergies, and this was a major omission omission given our efforts to inform the White House of our concerns and common-sense solutions.
While we recognize that the National Strategy is a framework, many in the food allergy community, including Celiac Journey had provided detailed comments to help inform the National Strategy, and were thus very disappointed that there was no express reference to "food allergies" including Celiac Disease, in the National Strategy.
We were also disappointed that the placement of food labels was only in Pillar 3 in the context of making "healthy choices." Food labeling and particularly improved allergen labeling belonged in Pillar 2: "Integrate nutrition and health: Prioritize the role of nutrition and food security in overall health, including disease prevention and management, and ensure that our health care system addresses the nutrition needs of all people."
For example, there was only one reference in the National Strategy to food allergens (i.e., "ingredient, and allergen information"), and this was in the context of online sales, "Facilitate making nutrition information easily available when grocery shopping online. While consumers increasingly use e-commerce to shop for groceries, nutrition information is not uniformly presented or always made easily accessible. HHS and FDA will publish a request for information to gather public input regarding industry practices, technology, and current challenges to inform guidance for the food industry on nutrition, ingredient, and allergen information that should be available for groceries sold online." (National Strategy, page 22)
This suggests at least two biases against Celiacs:
A) The list of Major Food Allergens currently required to be labeled is finite (already established) and adequately informs and safeguards the public about potentially life-threatening food allergens on the product labels themselves, notwithstanding the FDA asking for public comments in April 2022 on evaluating the public health importance of food allergens other than the Major Food Allergens (FDA Docket FDA-2021-N-0553). In total, there were 1,907 comments submitted to the FDA, and 1,576 comments mentioned Celiac and/or Gluten as a food allergen (82.6%).
B) This goal in the National Strategy on food allergen labeling appears to have been a retailing/IT issue in terms of digital merchandising of content (i.e., label contents for nutritional and allergen information), as opposed to a food manufacturer issue.
Putting labeling in just Pillar 3 of the National Strategy, and the manner in which it was done, suggests that this is more about nutrition than ingredients including allergens, and as such, it appears to be more about a "nice to have" or "should have" as opposed to a "must have."
Nutrition is fundamental for everyone, and it is important to understand nutritional elements (i.e., sodium, trans fat, sugar, etc.). However, for those with food allergies, the concept of making healthy choices is secondary to making safe choices that are free of the said allergen to which their immune system mounts a potentially life-threatening and life-debilitating response. In other words, before even worrying about the nutritional value of a food product, those with food allergies must cross a safety threshold as to whether the ingredients therein are safe. Just because some food may be healthy for some, that does not mean that these are safe choices for the those with food allergies.
As U.S. Senator Royal S. Copeland, MD (D, NY, 1923-1938) said, "What is food for one is poison for another." (Source: "Hearing Before the Senate Comm. on Commerce, 73d Cong. (1934), reprinted in Charles Wesley Dunn, Federal Food, Drug, and Cosmetic Act: A Statement of Its Legislative Record 1176 (1987).], at 1176."
For example, while a Non-IgE-Mediated food allergy does not trigger anaphylaxis and is not immediately life-threatening, people with Celiac Disease face potentially life-threatening and severe adverse health effects that can arise through Gluten ingestion, including by way of example: anemia, cancer, heart disease, immunological scarring, intestinal damage and malnutrition.
From our family's experience, my son Jax had severe intestinal damage at age 5 from eating Gluten for some period of time prior to his Celiac diagnosis, and this caused malnutrition and anemia. The ingestion of Gluten also caused failure to thrive, and his intestine took years to heal (although he is still anemic), but every time he accidentally gets glutened (like he was on April 1, 2023 as illustrated on the cover of his Citizen Petition), he gets violently ill (like food poisoning), and the auto-immune response repeats to attack his small intestine. Adding labeling of Gluten to the National Strategy in Pillar 2 makes more sense for those with a Celiac Disease, "Integrate nutrition and health: Prioritize the role of nutrition and food security in overall health, including disease prevention and management, and ensure that our health care system addresses the nutrition needs of all people."
Senator Cory Booker Gets It
Senator Booker showed his amazing level of empathy by spending meaningful time with us and Rep. McGovern to discuss our policy objective of labeling Gluten following his Opening Plenary remarks and panel discussion with Ambassador Susan Rice, Chairman Jim McGovern and Senator Mike Braun (R, IN), the bipartisan sponsors of the Conference.
It’s not often that a sitting U.S. Senator takes your cell phone, puts it on selfie mode and records a video to your son, but that’s what happened at the White House Conference. It actually happened twice. And yes he gave us hugs!
We are thankful that last year Senator Booker co-sponsored the Food Labeling Modernization Act ("FLMA") which among other many provisions will require that Gluten be labeled on all packaged foods in the U.S. The problem with the FLMA is that it would not declare Gluten-containing grains as Major Food Allergens. In addition, there have not yet been any Republican co-sponsors in the Senate for the FLMA so we are working on new stand-alone legislation for labeling Gluten on all packaged foods. On Jax's behalf, we presented Senator Booker with Jax’s Celiac Journey Challenge Coin and told the Senator that Jax challenged him to run the Rocky Steps next time he is in Philly!
Senator Debbie Stabenow, Chairwoman of the Committee on Agriculture, Nutrition, and Forestry, was moved by listening to our lived experience with Celiac and the challenges Celiacs face in the absence of having Gluten labeled as a Major Food Allergen. We presented Senator Stabenow with Jax's Celiac Journey Challenge Coin.
We were able to share our lived experience with Representative Rosa DeLauro, Chairwoman of the House Appropriations Committee and present Chairwoman DeLauro with Jax's Celiac Journey Challenge Coin. Chairwoman DeLauro was also receptive to learning about Celiac Journey's other goal of increasing Federal funding for Celiac research so that funding can become proportionate to Celiac Disease's prevalence, severity and treatment burden, as well as comparable research dollars to other auto-immune diseases, food allergies, and digestive diseases.
Chef José Andrés - Food is a National Security Priority
Fresh off his flight from serving the food needs of Puerto Rico in the aftermath of Hurricane Fiona , Chef José Andrés of the José Andrés Group and World Central Kitchen delivered an amazing speech to his "fellow food fighters" at the White House Conference. Jose was inspirational in speaking about the "weight of this moment" and the most important source of energy in the U.S. -- the food we eat! According to Jose, "we need to stop giving people bread crumbs, and start building bakeries!" We agree 100%!
When we spoke with Jose at the Conference about Jax's public policy objective of labeling Gluten as a Major Food Allergen to protect the Celiac community, he asked whether we have been in touch with David Fajgenbaum, M.D. and his team at Penn Medicine who are working on treatments and cures for auto-immune diseases. He is a great connector, and yes we are meeting with Penn Medicine later this month.
Thank You Representative McGovern
We are deeply grateful to Rep. McGovern for his vision to call for a White House Conference and introduce bipartisan legislation as a follow up to the first and only White House Conference on Hunger which was held in 1969 under President Nixon, the same year America landed a man on the moon. We were pleased to share our lived experience with Rep. McGovern on Celiac Disease, and our call to label Gluten as a Major Food Allergen. We also presented him with Jax's Celiac Journey Challenge Coin. We look forward to working with Rep. McGovern.
Evidence to Action: Using Research to Guide Policy
In addition to Senator Bill Frist, M.D. serving as the former Senate Majority Leader, he practiced for 12 years as a cardiac surgeon who came face to face with what nutrition was all about in terms of diet-related disease.
We are thankful to Senator Frist for his leadership on passing the Food Allergen Labeling and Consumer Protection Act of 2004 when he served as Senate Majority Leader. It was great to connect with Senator Frist and share our Celiac journey and why we now need to get Gluten labeled as a Major Food Allergen as a matter of health equity for 3.3 million Celiacs who are not adequately protected through FALCPA's voluntary labeling scheme for Gluten.
Lazurus Lynch Hosted a Great Panel Discussion
"I was so moved by your [Jax's Celiac] story. Thank you for bringing awareness to food insecurity among food related allergies. What an important point." -- Lazarus Lynch
Lazarus Lynch, Chef and Host, Chopped U moderated a great afternoon panel on Why improving food environments matters. Leslie and I thanked Lazarus for his reflections and questions posed on his panel on food insecurity and the trauma related thereto. We shared the trauma that is associated with food allergies for children including with Celiac Disease. We also enjoyed speaking with Dr. Susan Mayne from the FDA and Shane Grant from Danone.
White House Conference on Hunger, Nutrition and Health Capsule Video - Jax Bari, Age 9
Celiac Journey's Policy Objective
Reduce Diet-Related Disease By Labeling Gluten as a Major Food Allergen, just like it is in 85 countries around the world.
Just like 13 year old Joshua Davis tells the story for the needs of insulin (President Biden's State of the Union speech), my 9 year old son Jax tells the story about the needs of the Celiac community. Insulin is to Diabetics as Gluten Free food is to Celiacs.
In Secretary of Agriculture Tom Vilsack's remarks at the White House Conference, he stated,
"Something like this hasn’t happened in more than 50 years. Let’s keep the momentum of today going in a new and meaningful, strong way so we can fully meet this important moment -- for our children, for our community, and for our country.”
Now let's get started and harness the momentum of the White House Conference to label Gluten as a Major Food Allergen, just like it is in 85 countries around the world and in alignment with the 2021 FAO/WHO Expert Consultation from the Food and Agriculture Organization of the United Nations/World Health Organization (chaired by the FDA's Dr. Lauren Jackson - “Summary report of the Ad hoc Joint FAO/WHO Expert Consultation on Risk Assessment of Food Allergens. Part 1: Review and validation of Codex priority allergen list through risk assessment.”
"We are profoundly grateful to have been in the room where it happened and to have shared our lived experience at the White House Conference with such a meaningful gathering of thought leaders in food." -- Jon Bari, Celiac Journey
Celiac Journey's Resources for the White House Conference on Hunger, Nutrition and Health
Celiac Journey - One Sheeter on the White House Conference on Hunger, Nutrition and Health
Press Release - Bari Consulting Group, Celiac Journey and Gluten Free Finds on the White House Conference on Hunger, Nutrition and Health
Full Report - Bari Consulting Group, Celiac Journey & Gluten Free Finds, "Sharing Our Lived Experience with Celiac Disease - Comments on 'Evaluating the Public Health Importance of Food Allergens Other Than the Major Food Allergens Listed in the Federal Food, Drug, and Cosmetic Act: Guidance for FDA Staff and Stakeholders, Draft Guidance,' August 16, 2022." FDA Comment ID: FDA-2021-N-0553-1584, FDA Tracking Number l6w-qe9m-4tjy, August 16, 2022.
Call to Action: Submit Comments to FDA to Support Citizen Petition to Label Gluten as Major Food Allergen
Videos from the White House Conference
Main Stage Plenaries:
Opening Remarks from President Joseph R. Biden, Jr. and Secretary of Agriculture Tom Vilsack
Opening Plenary featuring Ambassador Susan E. Rice in conversation with Chairman Jim McGovern, Senator Cory Booker, and Senator Mike Braun
Afternoon Plenary featuring Secretary of Health and Human Services Xavier Becerra in conversation with Chairwoman Rosa DeLauro, Chairwoman Debbie Stabenow, and Mayor Eric Adams
Panel Sessions
Pillar 1 - Improve Food Access and Affordability:
Pillar 1a - Nourishing Brighter Futures: Ensuring affordable food for all children and families. Mike Curtin, Jr., CEO, DC Central Kitchen, moderated a conversation on supporting children and families in accessing affordable food in schools and at home with: Shavana Howard, Assistant Secretary of Family Support, Louisiana Department of Children and Family Services; Donna Martin, Director of School Nutrition Programs, Burke County Public Schools (GA); Mark Ramos, President, United Food and Commercial Workers International Union Local 1428; and Shannon Razsadin, President and Executive Director, Military Family Advisory Network.
Panel 1b - Public-Private Partnerships: Collaborating to increase affordable food options in underserved communities. Erin Fitzgerald, CEO, U.S. Farmers and Ranchers in Action, moderated a discussion with on working together to make it easier for everyone to access affordable foods with: Mary Blackford, Founder, Market 7; Diana Tellefson Torres, Executive Director, United Farm Workers Foundation; Kamau Witherspoon, CEO, Shipt; and Mindy Woods, Human Services Program Manager, City of Edmonds, WA.
Pillar 2 - Integrate Nutrition and Health:
Panel 2a - Food is Medicine: Bringing nutrition out of the health care shadows. Dr. Rajiv Shah, President, Rockefeller Foundation in conversation on the integration of nutrition into health care training, coverage, and delivery with: Dr. Kofi Essel, Pediatrician, Children's National Health System and Director, The George Washington University Culinary Medicine Program; Dr. Sachin Jain, President and CEO, SCAN Group and Health Plan; and Karen Pearl, President and CEO, God's Love We Deliver.
Panel 2b - Breaking Barriers: Bridging the gap between nutrition and health. Dr. Shereef Elnahal, Under Secretary for Health, U.S. Department of Veterans Affairs, in conversation on cultivating community development and advancing health equity to improve nutrition and health with: Dr. Thea James, Vice President of Mission, Boston Medical Center; Walter Murillo, CEO, NATIVE HEALTH; and Denise Scott, President, Local Initiatives Support Corporation.
Pillar 3 - Empower consumers to make and have access to healthy choices:
Panel 3a - Look Locally: Growing partnerships to expand local food options. Chuck Conner, President and CEO, National Council of Farmer Cooperatives moderated a discussion on bolstering local food systems to offer nutritious food, strengthen local economies, and support farmers and ranchers with: Charlene McGee, Program Manager, Multnomah County Department of Health (OR); Tara Roberts-Turner, Founding Farmer and General Manager, Wisconsin Food Hub Cooperative; Sherrie Tussler, Executive Director, Hunger Task Force; and Phoebe Wong, Student, College of the Holy Cross.
Panel 3b - Making Health Choices Easy: Why improving food environments matters. Lazarus Lynch, Chef and Host, Chopped U, moderated a discussion on enabling healthier choices where people shop, work, and play with: Kaster Dee Garrett-Adimora, Senior Store Manager, Everytable; Shane Grant, CEO, Danone North America; Dr. Susan Mayne, Director of the Center for Food Safety and Applied Nutrition, U.S. Food and Drug Administration; and Nadia Casseus Torney, Administrator, Kimball Elementary School (Washington, D.C.).
Pillar 4 - Support Physical Activity For All
Panel 4a - Fit for Life: Creating communities designed for activity. Tom Farrey, Founder and Executive Director, Aspen Institute Sports and Society Program, spoke on promoting physical activity and building communities with safer roads and greater access to parks with Al Bangoura, Superintendent, Minneapolis Park System; Jaci McCormack, Founder, Rise Above; and CiCi Rojas, Board Chair, YMCA.
Panel 4b - The Power of Play: Supporting physical activity for kids. Lysa Ratliff, President & CEO, KABOOM!, moderated a conversation on promoting children's lifelong health through physical activity in schools and communities with: Catherine Grano, School Nurse, Middletown Township Public Schools (NJ); Jermaine Harris, Community Policing Sergeant, Chicago Police Department and Co-Founder, Chicago Westside Sports; and Ann Marie Krautheim, CEO, GENYOUth.
Pillar 5 - Enhance Nutrition and Food Security Research:
Panel 5a - Evidence to Action: Using research to guide policy and scale pilots. Senator Bill Frist, Former Senate Majority Leader, in conversation on leveraging research and data to expand pilot programs and inform policy with: Swati Chandra, Director, Los Angeles County Food Equity Roundtable; Dr. Angela Odoms-Young, Associate Professor of Maternal and Child Nutrition, Cornell University; and Ross Wilson, Executive Director, Shah Family Foundation.
Panel 5b - Advancing Equitable Research: Developing innovative and inclusive policy solutions. Dr. Chavonda Jacobs-Young, Undersecretary for Research, Education, and Economics, U.S. Department of Agriculture, spoke on ensuring nutrition and food security research accounts for all communities and informs policies with: Dr. Maribel Campos-Rivera, Professor and Founder, University of Puerto Rico Center for Community Outreach and Health Across the Lifespan; Jimmieka Mills, Co-Founder, Equitable Spaces; Mia Ives-Rublee, Director of the Disability Justice Initiative, Center for American Progress; and Dr. Donald Warne, Professor and Co-Director, Johns Hopkins Bloomberg School of Public Health Center for American Indian Health.
