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:
Jon and Leslie Bari – “Securing Significant Federal Funding for Celiac Disease Research“
Benny Kerzner, MD, Medical Director, Celiac Disease Program, Children’s National Hospital – “Celiac Research – Why Now?“
Arunjot Singh MD, MPH, Director, Children’s Hospital of Philadelphia Center for Celiac Disease – “Celiac Disease 2020: Visualizing A Path to Advance Celiac Research & Develop a Cure“
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.
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.
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.
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:
$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.
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.
Representative Dwight Evans (D, PA-3, Philadelphia)
Representative John Joyce, M.D. (R, PA-13, Altoona)
Jon Bari and Leslie Bari, Founders of Celiac Journey 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, Gastroenterologist, Medical Director, Celiac Disease Program, Children’s National Hospital
Dr. Arunjot Singh, 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, Director, Celiac Disease Program, Boston Children's Hospital (former Executive Director, Celiac Disease Program, Children’s National Hospital)
In addition to staff members from the offices of Representative Evans and Joyce attending, it is worth noting that the Congressional Briefing was also attended by other Congressional staffers, including on behalf of Senator Robert Casey (D, PA), Senator Pat Toomey (R, PA), Senator Dick Durbin (D, IL), Congresswoman Madeleine Dean (D, PA-4), Congressman David Kustoff (R, TN-08), and Congressman Raul Ruiz, M.D. (D-CA-36).
According to Mr. Bari, “It was like a children’s story ‘Jax Goes to Capitol Hill’, and we all, including Jax, told the lawmakers about Celiac Disease, a serious autoimmune disease that afflicts Jax along with 3 million Americans, which is about 1% of the population. We had kids on Capitol Hill.”
There were about 75 people in attendance, including about 10 other kids from the Washington, D.C. area who took time out of school to be on Capitol Hill to support Jax and our mutual goals.
Following the Congressional Briefing, the Bari family, Dr. Singh and Ms. Weisbrod met with Congresswoman Dean, and when she asked Jax what was the one thing that Jax wanted her to know about Celiac Disease, Jax thought for a moment and then told Congresswoman Dean that “Celiac Disease is no joke!“
On March 13, 2020, Congresswoman Dean sent a letter to Chairwoman Rosa DeLauro (D, CT-3) and Ranking Member Tom Cole (R, OK-4) of the House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, and stated,
“As your Subcommittee considers the Fiscal Year 2021 Labor, Health and Human Services, Education, and Related Agencies appropriations bill, I respectfully request that you include $100 million in funding for Celiac Disease research within the National Institutes of Health… Currently, Celiac Disease research is severely underfunded in proportion to the scale of the disease. According to an analysis published in 2017 by the American Gastroenterological Association titled, “Disparities Among Gastrointestinal Disorders in Research Funding from the National Institutes of Health,” Celiac Disease receive[d] the lowest amount of NIH funding over a 5-year period. This funding averaged $3 million annually, or $1.00 for every person with Celiac Disease. Celiac Disease research also received the lowest amount of NIH grants. To address these shortcomings, and begin working towards a cure for Celiac Disease, we must robustly and continually fund NIH research on the disease.”
To download the presentations cited in the above post, please click on the links below:
Jon Bari, Congressional Briefing Presentation, Final 1-14-20
Bernie Kerzner, M.D., Congressional Briefing, Final, 1-14-2020
Arunjot Singh, M.D., Congressional Briefing, Final 1-14-20
Rep. Madeleine Dean (D, PA-4), Appropriations Request, LHHS, Celiac Disease Research, Funding, 3-12-20
Follow Up Coverage
CHOP Gastroenterologist and Patient Family Participate in Congressional Briefing Recap
Talking on Capitol Hill about the need for increased Celiac Research funding