By Amy Ratner, Beyond Celiac Medical and Science News Analyst
Celiac disease consistently received the lowest amount of federal research funding over a five-year period compared to other gastrointestinal conditions, a review of National Institutes of Health data found.
Additionally, the National Institute for Digestive and Kidney Diseases awarded the fewest number of grants to celiac disease research over the same period, from 2011 to 2015.
The review, published as commentary in the journal Gastroenterology, found that NIH funding, which is the major source of support for research in inflammatory gastrointestinal diseases, showed no association between the estimated prevalence or mortality rates of a disease. In general, NIH support is seen as essential for improving the understanding of health and disease.
The review included celiac disease, irritable bowel syndrome (IBS), Crohn’s disease, eosinophilic esophagitis (EoE), Barrett’s esophagus and non-alcoholic fatty liver disease (NAFLD).
Prevalence: The proportion of persons in a population who have a particular disease at a specified point in time or over a specified period of time.
Mortality rate: A measure of the frequency of occurrence of death in a defined population during a specified interval.
Celiac disease poorly understood
“These data suggest that a few diseases, including celiac disease and IBS, are underfunded in comparison with other diseases, especially when prevalence, burden and available treatment options are considered,” wrote authors Sonia Kupper, M.D., of the Celiac Disease Center at the University of Chicago, Daniel Leffler, M.D., of Beth Israel Deaconess Medical Center and Emma Clerx, a Harvard University student.
Celiac disease, with a prevalence of about 1 percent and mortality rate of 1.3, the highest among the diseases reviewed, received about $3 million per year. Meanwhile, Crohn’s disease, which had the second lowest prevalence at .25 percent and a mortality rate of 1.1, received about $16 million per year, the highest amount of funding.
Ciaran Kelly, M.D., director of the Celiac Center, Beth Israel Deaconess Medical Center, said NIH neglect of celiac disease research occurs because the condition continues to be poorly understood and not well recognized by the medical community in the United States.
Celiac disease was until recently considered rare and most people who have it have not been diagnosed, he said. The increased mortality rate mentioned in the review of NIH funding, as well as the morbidity of the disease, are under-appreciated, noted Kelly, a member of the Beyond Celiac Board of Directors and its scientific and medical advisory council.
“There is a widespread assumption that the gluten-free diet is a panacea for celiac disease, consequently research and new treatments are incorrectly considered unnecessary,” he said.
The review authors noted that they are not suggesting that any one disease is more important and that prevalence is not the only measure of disease importance. But they pointed out that the inequity of funding is apparent when mortality rates are considered. IBS and NALFD, neither of which is associated with increased mortality, still receive more funding than celiac disease.
“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,” the authors wrote. “Although Crohn’s disease has many available and emerging treatment options, celiac disease, for example, is more prevalent and has no current treatment to patients beyond the burdensome gluten-free diet.”
Patients feel the burden of celiac disease is so great that in one survey the only other condition that ranked at the same level of difficulty was end stage renal disease. And in one study, 25 percent of patients said the diet is so much of a burden that they regretted being diagnosed and would rather have continued having symptoms.
Fewer grants awarded
When the study authors compared the number of NIH grants awarded per year, they found that Crohn’s disease received an average of 40 while celiac disease consistently received the least, at approximately eight.
All the other gastrointestinal diseases reviewed also received more grants than celiac disease in the timeframe reviewed.
NIH has the power to encourage research in desired areas, according to the review. The authors noted that EoE funding experienced an upward trend, “possibly owing to program announcements and requests for applications put out by the NIH.” The last request for funding applications for celiac disease was made by NIH 18 years ago.
Some possible reasons for the disparity in NIH funding cited by the authors include varying numbers of established research programs to recruit young investigators, fewer grants submitted because of a lack of in investigators in the field because of poor funding and narrow expertise of the peer reviews on NIH review committees.
In contrast to the diseases that get low funding, Crohn’s disease has ample public and private funding. This allows for extensive research, which in turn, favors more awards. “This may seem circuitous. However, funding of Crohn’s disease research provides an example of the way in which success breeds success,” the authors wrote.
They conclude that intervention is necessary to improve the existent disparities in disease funding and urge national authorities to take notice and address the inequity to “improve progress across all gastrointestinal diseases and improve the quality of life for patients and their families.”
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