Celebrating Highlights of Jax Bari's Health Equity Advocacy During Celiac Disease Awareness Month
In reflecting on the progress of our family's patient advocacy organization, I am reminded of Laurene Powell Jobs' Commencement Address to the Class of 2021 at the University of Pennsylvania,
"Change in ourselves and change in the world happens similarly. It comes slowly, slowly, and then all at once. What matters is your readiness for the moment of revelation, of challenge, of opportunity. We have to be prepared to walk through the door when it opens, or, by our own power and purpose, to open it ourselves. And sometimes we need to tear down walls, the ones within and the ones without."
Grateful to World News Tonight with David Muir
In 2005, Laurene's late husband Steve Jobs, the former Co-founder, Chairman and CEO of Apple, opined in his Stanford Commencement Address that "you can't connect the dots looking forward; you can only connect them looking backward."
Along those lines, we feel that so much of our progress at Celiac Journey is rooted in that amazing story that David Muir reported on in May 2021 to commemorate Celiac Disease Awareness Month. Whenever I write "May is Celiac Disease Awareness Month," I can hear David's opening line in my mind from the story about Jax and his friends. In that #AmericaStrong segment, Jax and his friends shared their pediatric perspectives on Celiac, a potentially life-threatening and life-debilitating food allergy and auto-immune disease triggered by eating Gluten. Based on everything that followed, I can also see why World News Tonight is America’s #1 most watched newscast across all of television, and why Jax calls David "America's storyteller!"
As David reported, Jax's two primary goals are: 1) increasing Federal funding for Celiac Disease research to find treatment options other than a strict Gluten Free diet, a rescue medicine in the event of accidental ingestion, and ideally a cure; and 2) labeling Gluten on all packaged foods in the U.S., just like it is in in more than 85 countries worldwide, including in Canada and across Europe.
"Eating without fear is our hope. Food insecurity happens every day for Celiacs because of the constant threat of cross contact with Gluten, 80% of foods have Gluten in them, the high price of Gluten Free food, and Gluten is not required to be labeled on all packaged foods in the U.S." -- Jax Bari, Age 10
World News Tonight with David Muir Featured Jax and His Friends on the #AmericaStrong Segment - On May 19, 2021, Jax was featured on World News Tonight when David Muir reported on Jax following Jax's letter to David. Many people and organizations shared the news including various elected officials from both sides of the aisle: Pennsylvania Governor Tom Wolf (D, PA), U.S. Senator Pat Toomey (R, PA), Congressman Dwight Evans (D, PA-3), Congressman John Joyce, MD (R, PA-13), Congressman Tim Ryan (D, OH-13), etc.
Philadelphia City Council Recognized Celiac Awareness Month & Honored Jax Bari and David Muir - On May 27, 2021, Philadelphia City Council issued a Resolution recognizing the month of May as Celiac Disease Awareness Month in Philadelphia and honoring eight-year-old Philadelphian Jax Bari and David Muir for shining a national light on ABC's World News Tonight on the need for increased Federal funding for Celiac research and Federally mandated labeling of Gluten on all packaged foods.
6ABC Action News Philadelphia Applauded Jax for His Persuasive Writing and Advocacy - On May 28, 2021, 6ABC's Sharrie Williams reported, "A local 8-year-old is doing his part to get the word out. Not only has Jax Bari been recognized by Philadelphia City Council for his work to educate others about Celiac Disease, his message has been heard around the country thanks to his persuasive writing."
Jax Learned from Civil Rights Pioneer Jennifer Keelan-Chaffins - On June 1, 2021, the Bari family met with Jennifer Keelan-Chaffins and Cynthia Keelan about Jennifer's Role in the Capitol Crawl in March 1990 and Jennifer's Book "All the Way to the Top." At the age of 8, Jennifer crawled up the 83 steps of U.S. Capitol in March 1990 to shine a light for President George H.W. Bush and Congress that the Americans with Disabilities Act was needed to protect the civil rights of the disabled. Jennifer's message to to Jax was that kids can change the world. We are thankful to Jennifer and others for advocating to get the ADA passed since Celiac is now a recognized disability because it can interfere with major life activities on a daily basis including eating, sleeping, thinking, learning, and working.
Food Labeling Modernization Act of 2021: Bicameral Introduction - On August 4, 2021, Jax's food labeling goal became one step closer to reality thanks to the introduction of the Food Labeling Modernization Act of 2021 (FLMA) by Senator Richard Blumenthal (D, CT), Senator Sheldon Whitehouse (D, RI), Senator Ed Markey (D, MA), House Energy and Commerce Committee Chairman Frank Pallone, Jr. (D, NJ), and House Appropriations Committee Chairwoman Rosa DeLauro (D, CT). The FLMA will require that Gluten be labeled on all packaged foods.
President Joe Biden Applauded Jax Bari's Advocacy To Help Millions with Celiac Disease - On August 17, 2021, President Biden wrote to Jax saying "I admire your courage and the incredible work you've done to help the millions of Americans like you who live with Celiac disease. The story about you on the news was terrific, and I am so impressed that you met with Members of the United States Congress to talk about ways to further improve the lives of people with Celiac disease... Young Americans like you are the future of our Nation. When you make your voice heard, adults listen. I look forward to seeing where your future takes you and the positive changes you inspire for people with Celiac disease."
Advocated to Secretary Pete for Equitable Infrastructure - On September 16, 2021, Jax wrote to Secretary Pete Buttigieg, "Dear Secretary Pete: When I turned 8 in March, I wished for a cure for Celiac Disease and the 3 million Americans with Celiac. Eating without fear is our hope. Food insecurity happens everyday for Celiacs like me, especially when we travel. There is little to no safe Gluten Free food served on airplanes, at airports and at highway rest stops. That's like not having an ADA bathroom. Let's meet so I can help you reimagine equitable infrastructure."
Pennsylvania State Senate Honored Jax Bari's National Advocacy for Celiac Disease: Funding & Labeling - On September 29, 2021, Jax was honored by the Pennsylvania State Senate for his "advocacy, perseverance and genuine care for the community... who has been a leading voice for Celiac Disease awareness and he's only eight years old." State Senator Amanda Cappelletti (D, PA-17) honored Jax with a Gluten Free breakfast meet and greet and then with a proclamation on the floor of the Pennsylvania Senate with then Pennsylvania Lieutenant Governor John Fetterman presiding. Before heading to Hershey's World of Chocolate, Jax also met with Pennsylvania State Senator Jay Costa, Representative Malcolm Kenyatta, and Representative Matt Bradford.
Recruited 9 Members of Congress to Join the Congressional Celiac Disease Caucus - As of September 20, 2021, Jax (age 8 at the time) had recruited 9 (nine) Members of Congress to join the Congressional Celiac Disease Caucus. This is amazing because Celiac is not a red or blue issue. Celiac is a red, white and blue issue that impacts Americans who are Democrats, Republicans and Independents. This was a follow up to the bipartisan Congressional Briefing Jax hosted on January 14, 2020 with Congressman Dwight Evans (D, PA-3, Philadelphia) and Congressman John Joyce, M.D. (R, PA-13, Altoona): "Securing Significant Federal Funding for Celiac Disease Research."
Appeared on 6ABC Action News in Philadelphia - On September 29, 2021, 6ABC Action News in Philadelphia applauded Jax Bari's advocacy. According to 6ABC's Sharrie Williams: "He may only be 8 years old, but little Jax is already leaving a big mark on his community…" 6ABC's Maggie Kent went onto explain, "Intelligent advocate, this kid has it all going on. 8 year old Jax Bari was dealt a major blow when he was diagnosed with Celiac Disease, but he's turned his efforts to educating others and advocating for change."
PA Governor Tom Wolf Applauded Jax Bari's "Monumental Achievements" To Help Millions with Celiac - On November 18, 2021, Pennsylvania Governor Tom Wolf honored Jax Bari in recognition of his "monumental achievements in raising awareness for Celiac Disease. Pennsylvania is shaped and strengthened by the character and leadership of extraordinary individuals like you."
NIH Issued "Notice of Special Interest" in Celiac Disease Research for the First Time in 22 Years - On November 23, 2021, the NIH issued a Notice of Special Interest in Celiac research for the first time in 22 years. "Although a gluten-free diet is an effective treatment in many individuals, recent research has revealed that up to 50% of individuals following a gluten-free diet are inadvertently exposed to gluten, and a substantial minority develop persistent or recurrent symptoms." In their Notice of Special Interest (NOSI), the NIH is seeking applicants for NIH grants supporting research on the origin or cause of Celiac Disease; the development of Celiac Disease; the identification of therapeutic targets; and the development of therapies or strategies to prevent, manage or treat the disease.
Congresswoman Dean Awards Jax with Certificate of Special Congressional Recognition - On December 6, 2021, Congresswoman Madeleine Dean (D, PA-4) awarded Jax with a Certificate of Special Congressional Recognition which stated, "In acknowledgement of your hard work and dedication toward raising awareness for Celiac Disease and advocating for appropriate food labeling to ensure the safety and well-being of all consumers. Your dedication sets an example of the positive influence one person can have to affect change in the world. I am honored to recognize your efforts and fortunate to have you benefitting my legislative district. May you continue to strive for and attain excellence and success in all your future endeavors."
Jax Met with Dr. Sandi Ford, Special Assistant to President Joe Biden - On May 7, 2022, we met with Dr. Sandi Ford, Special Assistant to the President of the United States for Public Health and Science, to inform President Joe Biden about Celiac Disease and the unmet needs of 3.3 million Americans including labeling Gluten as a Major Food Allergen on all packaged foods and increasing Federal funding to find a treatment option other than a strict Gluten Free diet for life, and a cure.
National Academies of Science Recommended that NIH Create an Office of Autoimmune Disease Research - On May 10, 2022, the National Academy of Sciences, Engineering and Medicine recommended in their Congressionally mandated report "Enhancing NIH Research on Autoimmune Disease" that the NIH should create an Office of Autoimmune Disease Research. Enhancing NIH Research on Autoimmune Disease specified 11 autoimmune diseases for special focus including Celiac Disease, Sjogren's disease, systemic lupus erythematosus, antiphospholipid syndrome, rheumatoid arthritis, psoriasis, inflammatory bowel disease (Crohn's disease and ulcerative colitis), primary biliary cholangitis, multiple sclerosis, Type 1 diabetes, and autoimmune thyroid disease (Graves' disease and Hashimoto's thyroiditis). According to the May 10, 2022 press release, "the commonalities across autoimmune diseases, such as mechanistic pathways, genetics, and effects of environmental factors, may provide significant insights that can further the development of patient care and therapies, and offer the greatest opportunity for advancing the field, the report says... There is a lack of long-term (20 years or more) population-based epidemiology studies on autoimmune disease, the committee found. Such studies would allow for, among other things, assessing trends, risk factors, and costs of disease; identifying differences among population subgroups; and determining the prevalence of under-researched autoimmune diseases, such as celiac disease."
Appeared on Fox 24 South Carolina - On May 11, 2022, the Bari family appeared with Leyla Gulen on Fox 24 South Carolina to talk about Celiac Disease Awareness Month and their advocacy efforts to label Gluten as a Major Food Allergen with Senator Tim Scott.
Met with Congresswoman Mary Gay Scanlon - On June 1, 2022, Jax met with Representative Mary Gay Scanlon (D, PA-5) to ask her to sponsor the Food Labeling Modernization Act, which she did two weeks later.
Participated in the White House Conference on Hunger, Nutrition, and Health Listening Session - On June 7, 2022, the Baris participated in and provided spoken comments in the Breakout Room for Pillar 2 in the Listening Session for the White House Conference on Hunger, Nutrition, and Health.
Submitted Written Comments to Inform the White House Conference on Hunger, Nutrition, and Health - On July 15, 2022, Celiac Journey submitted written comments to the White House Conference on Hunger, Nutrition, and Health.
Participated in Community Organizing to Respond to FDA's Draft Guidance on Evaluating the Public Health Importance of Food Allergens Other than the Major Food Allergens - In Summer 2022, Celiac Journey worked with various organizations, doctors, scientists as well as individuals with Celiac, their parents, caretakers and loved ones, to help generate 1,576 public comments submitted to the FDA on the labeling of Gluten and Celiac Disease, which represented 82.8% of the 1,903 total comments that the FDA received on Docket number: FDA-2021-N-0553.
Submitted Celiac Journey's Comments to the FDA - On August 16, 2022, Celiac Journey, Bari Consulting Group and Gluten Free Funds submitted detailed written comments to the FDA in response to the FDA Draft Guidance on Evaluating the Public Health Importance of Food Allergens Other than the Major Food Allergens. FDA-2021-N-0553. The Bari Comments were intentionally very detailed in order to aggregate a lot of seemingly disparate, yet related, historical, legislative, regulatory, legal, medical and moreover patient advocacy perspective information. The Bari Comments were designed to ensure that the record is very clear since the FDA's Draft Guidance suggests that time has a way of blurring perspective for the FDA when it comes to the Food Allergen Labeling and Consumer Protection Act of 2004.
Attended President Biden's Soul of the Nation Speech at America's Birthplace - On September 1, 2022, Jax was invited to attend President Joe Biden's Soul of the Nation speech at Independence Hall in Philadelphia. After the speech, Jax presented his first Celiac Journey challenge coin to U.S. Senator Chris Coons (D, DE) at Independence Hall in Philadelphia.
Met with Pennsylvania Rep. Malcolm Kenyatta - On September 15, 2022, Jax met with Rep. Malcolm Kenyatta (D, PA-181) to inform him of our policy objective for the White House Conference on Hunger, Nutrition, and Health and ask for funding from the Commonwealth of Pennsylvania for Celiac research.
Jax Bari Helped to Change the White House's language in the National Strategy on Hunger, Nutrition, and Health When Referring to Disabilities - On September 25, 2022, Jax Bari informed the White House about avoiding euphemisms (i.e., people who are differently-abled") when referring to people with disabilities. On September 27, 2022, just one day before the historic White House Conference, the Biden-Harris Administration's National Strategy on Hunger, Nutrition, and Health was released and the revised language on disabilities read as follows: "The toll of hunger and diet-related diseases is not distributed equally; these challenges disproportionately impact communities of color, people living in rural areas, people living in territories, people with disabilities, older adults, LGBTQI+ people, military families, and Veterans." (emphasis added)
Attended the White House Conference on Hunger, Nutrition, and Health - On September 28, 2022, the Bari family attended the White House Conference on Hunger, Nutrition, and Health and shared our lived experience and policy objective of reducing diet-related disease by labeling Gluten on all food products. Jax Bari’s capsule video testimonial was one of the most popular testimonials on "How have you, your family, or your community been affected by diet-related disease?" The Bari family met with FDA Commissioner Dr. Robert Califf, Ambassador Susan Rice, Senator Cory Booker (D, NJ), Senator Debbie Stabenow, Representative Jim McGovern, Representative Rosa DeLauro, Chair House Appropriations Committee, Representative Mary Gay Scanlon, FDA's Susan Mayne, Chef Jose Andres, etc. 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.
At the White House Conference, it felt like President Biden was speaking directly to Leslie and me when he said,
"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).
Jax Bari Talked Food Policy with President Biden and Asked for Help: Please Label Gluten - On October 20, 2022, Jax Bari met with President Joe Biden and asked for the President's help to protect him and 3.3 million American Celiacs by labeling Gluten as a Major Food Allergen, like it is done in 85 other countries worldwide. In addition, Jax also met U.S. Senator Bob Casey (D, PA) and U.S. Congressman Brendan Boyle (D, PA-2).
Met Pennsylvania Attorney General Josh Shapiro - On November 6, 2022, Jax asked Pennsylvania Attorney General Josh Shapiro to help provide better consumer protection to 3.3 million Americans including 129,000 Pennsylvanians and Jax, by calling on Secretary Xavier Becerra to exercise his existing statutory authority and label Gluten on all packaged foods in the U.S., just like it is in 85 other countries worldwide. On that same day, Jax also spoke with U.S. Congresswoman Scanlon (D, PA-5), Pennsylvania State Senator Amanda Cappelletti (D, PA-17) and Pennsylvania House of Representatives member Mary Jo Daley (D, PA-148).
Met with the White House Domestic Policy Council - On November 10, 2022, Jax took his case to the White House and met with White House Domestic Policy Council ("DPC") staff to share our lived experience presentation with the DPC on the Celiac community's request for help.
Met with Senior FDA Leadership - On December 6, 2022, the Bari family along with with Dr. Virginia Stallings met with senior FDA leadership to share their lived experiences and research on the unmet needs of 3.3 American Celiacs with the voluntary labeling scheme of Gluten. Jax was joined by Dr. Virginia Stallings, a board-certified nutrition pediatrician, Professor of Pediatrics and Director of the Nutrition Center at the Children's Hospital of Philadelphia (where Jax has been treated for Celiac Disease since 2018). Dr. Stallings has also called for Gluten to be required to be labeled on all packaged food products in the U.S.
Celebrated Bipartisan Blueprint on Sesame Food Allergen Labeling - On January 1, 2023, the FASTER Act went into law and required that Sesame be labeled on all packaged foods in the U.S. The FASTER Act is a bipartisan blueprint for labeling Gluten as a Major Food Allergen. We had worked to support Senator Scott's office to help pass the FASTER Act in April 2021. On April 23, 2021, President Joe Biden signed the FASTER Act into law which added Sesame as the 9th Major Food Allergen that is required to be labeled on packaged foods in the U.S. (Note: we believe that HHS Secretary Becerra has existing statutory authority to label Gluten now as a Major Food Allergen without requiring any additional legislation.)
Asked to Speak on Panel at Children's Hospital of Philadelphia's Celiac Education Day - On March 5, 2023, Jax spoke on a kids panel at the 18th Annual CHOP Celiac Education Day.
Met Pennsylvania Speaker of the House Joanna McClinton and Rep. Regina Young - On March 16, 2023, Jax met Democratic Speaker of the Pennsylvania House Joanna McClinton (D, PA-191), Rep. Regina Young (D, PA-185), and Rep. Jordan Harris (D, PA-186) at the Francis Myers Recreation Center to ask for more state funding for Celiac research at Children's Hospital of Philadelphia and Penn Medicine.
Attended the White House Easter Egg Roll - On April 10, 2023, Jax was invited to attend to the White House Easter Egg Roll. Following the event, Jax took the time to make it a teachable moment and share how the White House Easter Egg Roll fell short in accommodating kids with Celiac and other food allergies.
Met with the White House Domestic Policy Council Staff - On April 12, 2023, we shared Jax's advocacy journey and update with staff from the White House Domestic Policy Council, requested that the White House be illuminated in green to commemorate Celiac Disease Awareness Month on May 16, 2023, and requested that the White House issue a Proclamation for Celiac Disease Awareness Month in May.
Met with Senior Staff in the Immediate Office of HHS Secretary Xavier Becerra - On April 17, 2023, the Bari family traveled to Washington, D.C. and shared their lived experience and Celiac Journey's research on why Gluten needs to be labeled on all packaged foods in the U.S., just like it is 85 countries worldwide. In addressing how President Biden's Executive Orders on advancing equity for underserved communities are expressly applicable to the decision-making process for labeling Gluten on all packaged foods, Celiac Journey prepared the following Memo to Secretary Becerra's staff entitled, "An Analysis of How Celiacs Belong to an Underserved Community of Persons with Disabilities Who Have Systematically Been Denied a Full Opportunity to Participate in Aspects of Economic, Social, and Civic Life."
Met with Representative Jim McGovern - On April 17, 2022, the Baris met with Representative Jim McGovern (D, MA-2), and we shared our lived experience, thanked Rep. McGovern for sponsoring the White House Conference on Hunger, Nutrition, and Health, and asked for his help in labeling Gluten as a Major Food Allergen.
In meeting again with Rep. McGovern, we reflected on his words from the White House Conference and asked him for his continued assistance with reducing diet-related disease with the labeling of Gluten on all food packages, "And so, you know, what happens today is important, but what happens tomorrow is even more important. And the follow up and we all have to keep our commitments and our word here." That same week, Rep. McGovern personally spoke with Secretary Becerra about labeling Gluten.
Celebrated Celiac Awareness Month - On May 16, 2023, the Ben Franklin Bridge was illuminated in green to shine a light on Celiac Disease.
Governor Josh Shapiro Issued Proclamation Recognizing May 16, 2023, as Celiac Disease Awareness Day in Pennsylvania - "Greetings: It is my honor to recognize May 16, 2023, as Celiac Disease Awareness Day. Celiac disease is a serious, genetic autoimmune disorder affecting more than 3 million Americans. This disease is often undiagnosed or misdiagnosed, and can lead to numerous other disorders, including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases. Unfortunately, there are no pharmaceutical treatments or cures for celiac disease and the only known effective treatment is a strict life-long gluten free diet. Raising awareness of celiac disease will help bring about acceptance and support for those diagnosed with the disease and will help advocate for urgently needed medical research and advances. I wish to extend my gratitude and appreciation for the medical professionals, advocates, organizations, and individuals dedicated to improving the quality of life and the health of people with celiac disease. I encourage all citizens to increase their knowledge and support to those living with this condition."
Featured on World News Tonight with a Follow Up #AmericaStrong Story - On May 31, 2023, World News Tonight with David Muir reported a story, "Young Celiac Disease Activist Invited to the White House."
Featured on CBS3 Philadelphia - On May 31, 2023, CBS3 Health Reporter Stephanie Stahl reported, "10-year-old with Celiac on mission to get better food labeling."
Food for thought...