National Celiac Disease Awareness Day Presents a Call to Action
- Jon Bari
- Sep 14, 2019
- 7 min read
Updated: Jan 22
September 13th is National Celiac Disease Awareness Day in honor Dr. Samuel Gee (1839-1911) who first identified a link between Celiac Disease and diet!
Today should also be a rallying cry for the 3.3 million Americans with Celiac Disease and their loved ones to rise up and demand that the status quo dating back to 1952 must change.
In 2010, the United States Senate unanimously approved Senate Resolution 605 designating September 13th as National Celiac Disease Awareness Day whereby the “Senate recognizes that all people of the United States should become more informed and aware of Celiac Disease.”
"Whereas the connection between Celiac Disease and diet was first established by Dr. Samuel Gee, who wrote [in 1887], 'if the patient can be cured at all, it must be by means of diet.'"
Nine years following this Senate resolution, Celiac Disease still impacts more than 1% of the population or about 3.3 million Americans including my 6-year-old son, and it is high time that the National Institutes of Health (NIH) allocate meaningful funding increases to find treatment options, other than a strict Gluten Free lifetime diet, and a cure for this potentially life-threatening food allergy and serious auto-immune disease.
How Did We Get Here?
The year was 1887… Grover Cleveland was President of the United States, Gustave Eiffel began work on the Eiffel Tower in Paris, Americans celebrated the 100th Anniversary of the Constitution of the United States (1787), and Dr. Samuel Gee presented the first modern definition of Celiac Disease at a lecture at the Hospital for Sick Children in London. Dr. Gee first established the connection between Celiac Disease and diet, and theorized, “if the patient can be cured at all, it must be by means of diet.”
That was 132 years ago!!!
During his career, Dr. Gee experimented with multiple types of diets for his patients. However, he was unable to pinpoint which food items activated Celiac Disease.
In 1952, it was first discovered that Gluten was the trigger of Celiac Disease. Harry S. Truman was President of the United States, the Korean War was being fought, and Dr. Jonas Salk was poised to develop and test a Polio vaccine (1953-1954) which led to the Polio vaccine being licensed in 1955.
That was 67 years ago!!!
Fast forward to 2019, and the only known treatment option for Celiac Disease is a medically required, strict Gluten Free diet, with no exceptions!
In other words, since theorizing in 1887 that treating Celiac Disease patients "must be by means of diet" and discovering in 1952 that Gluten was the trigger of Celiac Disease, the one and only treatment is still the same. For all intents and purposes, the status quo from 1952 remains, and that is unacceptable!
To date, Celiac Disease research has produced only a single approved treatment -- strict adherence to a lifelong Gluten Free diet with no exceptions! However, as Celiac Disease researchers have found, "[t]here is no such thing as a gluten-free diet because of the constant risk of cross-contact with gluten, and gluten is in 80% of our foodstuffs." Additionally, for up to 30% of Celiac patients, diet alone is inadequate for remission in that it alleviates some symptoms, but does not necessarily heal and resolve intestinal damage caused by Celiac Disease. There is no medicine or surgery available to treat Celiac Disease, and a person cannot outgrow Celiac Disease.
To cure Celiac Disease, we need to fundamentally shift how our society and government leaders, including in Congress and at the National Institutes of Health (NIH), are educated on this disease. Why? Because the current research paradigm for Celiac Disease, one that has existed for many decades, has not delivered a cure or any medical treatment options.
Ironically, back in 1887 when Dr. Gee first theorized a link between Celiac Disease and diet, the roots of the United States National Institutes of Health were started when a one-room laboratory was created within the Marine Hospital Service (MHS), which was the predecessor agency to the U.S. Public Health Service (PHS).
As U.S. Senator Ransdell said in 1931, the early planners of the NIH "saw with clear eyes the possibilities of the National Institute of Health for preventing and curing disease with its awful train of suffering and colossal economic losses to the world." According to the NIH, “NIH has grown to its preeminent status as the largest source of funding for medical research in the world.”
While the NIH has achieved many amazing milestones and enabled countless medical breakthroughs from 1887-2019, the NIH has historically underfunded Celiac Disease research. For example, from 2011-2015 the NIH only allocated about $3.0 million annually for Celiac research in spite of the treatment burden for the 3 million Americans afflicted and their lack of any medical treatment options. In other words, the Federal government has spent just $1 in medical research per American who suffers from Celiac Disease per year, and that is a disgrace!
To understand and to remedy 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 including Emma Clerx, Harvard University; Dr. Sonia Kupfer, Celiac Disease Center at University of Chicago; and Dr. Daniel Leffler, North American Society for the Study of Celiac Disease, Beth Israel Deaconess Medical Center. According to the researchers,
"The National Institutes of Health (NIH) is the major funder of research in gastrointestinal (GI) diseases. The National Institute for Diabetes and Digestive and Kidney Diseases’ discretionary appropriation for fiscal 2016 is $1.818 billion of the overall NIH $32.31 billion. As such, NIH support is essential for improving our understanding of health and disease from pathologic mechanisms to clinical trials."
These researchers also found that, out of various Gastrointestinal Disorders, from 2011-2015:
“Celiac disease consistently received the lowest amount of NIH funding over the 5-year period, at approximately $3 million per year.” (out of $32.31 Billion)
“Celiac disease consistently received the lowest amount of NIH grants, at approximately eight grants per year.”
“Barrett’s esophagus, with a prevalence of approximately 1%, received $64.1 million over the 5-year period. Celiac disease, with prevalence very similar to that of Barrett’s Esophagus at approximately 1%, received significantly less funding over the 5-year period at $15.4 million — the lowest amount of all the diseases studied.”
“Although there is no global metric for disease importance, it is difficult to justify on medical and scientific bases a reason for such large and persistent funding differences. Although Crohn’s disease has many available and emerging treatment options, celiac disease, for example, is more prevalent and has no current treatment available to patients beyond the burdensome gluten-free diet; however, celiac disease received only a small fraction of the funding that Crohn’s disease received from the NIH over the 5-year period.”
“In conclusion, NIH funding of GI diseases is not proportional to disease prevalence or mortality. These data further suggest that a few diseases, including IBS and celiac disease, are underfunded in comparison with other diseases, especially when the prevalence, burden, and available treatment options are considered. Plausible reasons for this disparity include varying numbers of established research programs to recruit young investigators, fewer grants submitted because of a lack of investigators in the field owing to poor funding, and narrow expertise of peer reviewers on NIH review committees. In contrast with disorders with low funding levels, ample public and private funding of Crohn’s disease allows for excellent research, which in turn, favors more awards of research funding. This may seem circuitous; however, funding of Crohn’s disease research provides an example of the way in which success breeds success.” (emphasis added)
Call to Action– “I’m as mad as hell, and I’m not going to take it anymore!
It’s time for Celiac Disease patients and their families to stand up and demand serious Federal action in terms of serious Federal funding for research. In the immortal words of Academy Award winning actor Peter Finch who played the TV network news anchor Howard Beale in the 1976 movie, “Network”, Beale ranted about the ills of society, including that,
“Our food is unfit to eat!.. All I know is that first you’ve got to get mad. You’ve got to say: I’m a human being, god-dammit! My life has value!”
It's time that the Celiac community to say, "I'm as mad as hell, and I’m not going to take this anymore!"
The Bottom Line on National Celiac Disease Awareness Day 2019
Notwithstanding the Herculean efforts by some brilliant, small and under resourced research teams and advocacy groups, the paucity of NIH funding has created a vacuum and stifled innovation in the efforts to treat and cure Celiac Disease. This can change in FY 2020 with meaningful NIH funding that validates research ready initiatives at multi-institute translational research centers including at the University of Chicago Celiac Disease Center, Celiac Disease Center at Columbia University Medical Center, Harvard Medical School Celiac Research Program, Celiac Disease Program at Children’s National Health System and Children’s Hospital of Philadelphia’s Celiac Disease Center.
Author’s Note: Family Gratitude and Connections to the NIH
I appreciate NIH's amazing achievements that have been made in so many life changing areas over the years. I am a “product” of that research. My father, Sid Bari, celebrated his 97th birthday in November 2019, and in addition to being a Holocaust survivor, he was one of the earliest recipients of open heart surgery by Dr. Robert E. Gross at Children's Hospital Medical Center in Boston (better known today as Boston Children’s Hospital) in July 1949 when he was 26.
In addition to my father, my father-in-law also has a connection to NIH research. When he was a student at Cornell in the summer of 1966, Howard Morris worked at the NIH in Bethesda as part of the COSTEP (Commissioned Officer Student Training and Extern Program), a part of the U.S. Public Health Service. At NIH, Howard had the privilege of working directly with Sheldon Pinnell, M.D., assisting in his research into the understanding of how human connective tissue is produced and organized. Howard worked on evaluating the components of the protein elastin in coronary arteries (and factors contributing to its breakdown). Howard recalls that one of his research projects involved starting with 180 chicken eggs, which were injected with different substances, and then incubated and hatched. The chicks were then raised on different diets. According to Howard, “I’ll leave out the gory details, but after the aortas were removed, experiments were done on the aortas to evaluate what did and did not cause the elastin to break down. Dr. Pinnell became a leader at Duke University’s School of Medicine and today there is a Duke Pinnell Center for Investigative Dermatology named in his honor. Dr. Pinnell is known as the "Founding Father of Topical Antioxidants."
