We want to thank President Biden for recognizing Jax Bari's advocacy efforts to help millions of Americans with Celiac Disease!
"I admire your courage and the incredible work you've done to help the millions of Americans like you who live with Celiac disease." President Joe Biden to Jax Bari
Jax was thrilled to receive the letter from the President! He loved reading it and proudly shared it with his family!
Jax's first reaction to me was to ask when his meeting will be with President Biden and First Lady Dr. Jill Biden to tell them about Celiac Disease and ask for help. Jax picked up on President Biden's line, "When you make your voice heard, adults listen," and Jax said that he wants "the most powerful adult in the world to listen" to him in person. Out of the mouths of babes... So here goes another bite at the apple.
Jax's Letter to President Biden, April 30, 2021
Jax's letter was an 8 year old's plea for help to the President to share his lived experience and that of 3 million Americans -- "Eating without fear is our hope. Food insecurity for Celiacs happens everyday" because of the constant threat of cross contact with Gluten, 80% of foods have Gluten in them, the high price of Gluten Free food, the limited availability of Gluten Free food, and moreover that Gluten is not required to be labeled on packaged foods in the US like it is in Canada and Europe. In other words, food insecurity is the everyday life of any Celiac patient, no matter his or her age or socio-economic status.
Jax Will Continue to Make His Voice Heard - Jax Would Like "The Most Powerful Adult in the World to Listen" to Him in Person
Jax Goes to Washington - Jax wants to go to the White House to tell his story directly to the President and/or First Lady Dr. Biden. Based on our research, it would mark the first time in history that a President would address Celiac Disease, a serious auto-immune disease that afflicts 3 million Americans. We live within 2.5 hours hours of DC, and Jax loves taking Amtrak, just like the President.
Food Labeling Modernization Act Was Introduced in August 2021 - As David Muir reported on World News Tonight on May 19, one of Jax's two goals (in addition to increasing Federal funding for Celiac research) is to require that Gluten be labeled on all packaged foods in the US, just like it is in 85 countries around the world including in Canada and across Europe.
On August 4, 2021, Jax's labeling goal became one step closer to reality when the Food Labeling Modernization Act was introduced 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).
We would love to have President Biden come out and support Jax's labeling goal and the Food Labeling Modernization Act of 2021 that would require that Gluten be labeled on all packaged foods just like the other top 8 allergens (soon to be the top 9 allergens with Sesame after President Biden signed the FASTER Act on April 23).
Federal Funding for Celiac Research - Advanced Research Projects Agency for Health
We appreciate that President Biden wrote, "That's why I asked Congress for $6.5 billion to launch the Advanced Research Projects Agency for Health (ARPAH) to accelerate the pace of breakthrough advances that prevent and treat diseases!"
However, that does not provide much comfort. Historically, even when Congress has increased NIH's budget over the past 10-15 years, Celiac Disease has received a disproportionate share and de minimis funding amount in the aggregate, based on peer reviewed financial and scientific analysis. These analyses looked at disease prevalence, treatment burden and lack of any other treatment options available across the spectrum of NIH funded research areas including with digestive diseases (NIDDK) and auto-immune diseases (NIAID). That is also another reason why Presidential leadership is so desperately needed at this critical time since this is a matter of systemic health inequity and not just increasing across-the-board NIH funding.
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