Congressional Briefing – Securing Significant Federal Funding for Celiac Disease Research

Thank you Congressman Dwight Evans (D, PA-3, Philadelphia) and Congressman John Joyce, M.D. (R, PA-13, Altoona) for hosting the Congressional Briefing – “Securing Significant Federal Funding for Celiac Disease Research”. After some introductory remarks from Congressmen Evans and Joyce, Jon and Leslie Bari began with presenting the patient perspective, reviewed the historical underfunding of Celiac Disease research by the National Institutes of Health (NIH) and presented a road map forward to help enable biomedical breakthroughs. Below please find a video of the Congressional Briefing:

Presentation Links

Congressional Briefing: Securing Significant Federal Funding for Celiac Disease Research
Date: Tuesday January 14, 2020
Time: 3:00PM-4:30PM EST
Location: Capitol Visitor Center – Congressional Meeting Room North (CVC 268), Washington, D.C.

Pictured from Left to Right: Arunjot Singh MD, MPH (CHOP), Leslie Bari, Jon Bari, Jax Bari, Congressman Dwight Evans, Vanessa Weisbrod (Children’s National Hospital), and Benny Kerzner, MD (Children’s National Hospital)

Research Summary

1) Celiac Disease afflicts 3 million Americans, or about 1.0% of the population (by estimate 129,000 Pennsylvanians and 16,000 Philadelphians suffer from Celiac). The only available treatment is strict adherence to a lifelong, Gluten Free diet. However, according to respected researchers including at the UChicago Center for Celiac Disease, “there is no such thing as a truly Gluten-FREE diet” because of the constant risk of cross-contact with Gluten, and Gluten is in 80% of our foodstuffs.

2) Researchers are finding that Celiac Disease prevalence is doubling approximately every 15 years, making it a public health epidemic. Gluten ingestion for people with Celiac causes permanent immunological scarring, doubles the risk of heart disease, and acts as a carcinogen.

3) To understand and correct the historically inadequate NIH funding of Celiac Disease, it is instructive to read the peer reviewed academic analysis published in 2017 by the American Gastroenterological Association entitled, “Disparities Among Gastrointestinal Disorders in Research Funding From the National Institutes of Health.” This analysis was written by some of the world’s leading GI researchers, which found that, out of various Gastrointestinal Disorders, from 2011-2015::
A. “Celiac disease consistently received the lowest amount of NIH funding over the 5-year period, at approximately $3 million per year.” NIH has spent about $1.00 per American with Celiac per year, and that is way too little to move the needle.
B.“Celiac disease consistently received the lowest amount of NIH grants, at approximately eight grants per year.”
C. “In conclusion, NIH funding of GI diseases is not proportional to disease prevalence or mortality.” (emphasis added)

To address the historical shortcomings, we have requested:

1) $100 Million in annual Federal funding for Celiac research to put Celiac on par with other NIH well-funded research areas such as Chron’s Disease, Food Allergies and Alzheimers, for example.

2) A seat at the table with the NIH to help them develop the congressionally mandated NIH Plan “to better coordinate existing research and focus new research efforts toward causation and, ultimately, a cure of this disease” that is due to the House and Senate Appropriations Committees on March 20, 2020.

Featured Speakers

  • Congressman Dwight Evans (D, PA-3, Philadelphia)
  • Congressman John Joyce, MD (R, PA-13, Altoona)

Panelists:

  • Jon and Leslie Bari, Founders of CeliacJourney and the Instagram account at @Glutenfreefinds_pa and parents of Jax Bari (6) who was diagnosed with Celiac Disease at Children’s Hospital of Philadelphia in August 2018.
  • Dr. Benny Kerzner, MD, Gastroenterologist, Medical Director, Celiac Disease Program, Children’s National Hospital
  • Dr. Arunjot Singh MD, MPH, Attending Physician, Division of Gastroenterology, Hepatology & Nutrition, Children’s Hospital of Philadelphia (CHOP), Director, CHOP Center for Celiac Disease; Assistant Professor of Pediatrics, Perelman School of Medicine, University of Pennsylvania
  • Vanessa Weisbrod, Executive Director, Celiac Disease Program, Children’s National Hospital

To download the presentations cited in the above post, please click on the links below:

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s