(Reuters Health) - Gastrointestinal (GI) disorders such as Crohn’s disease and Barrett’s esophagus get a bigger slice of U.S. public research funding than other GI conditions that affect many more Americans, researchers say.
Writing in the journal Gastroenterology, the study team questions how the National Institutes of Health makes spending decisions for GI research after finding no link between how many Americans are affected by a disease and the amount of money directed toward studying it.
Crohn’s disease, for example, has the second lowest prevalence of the conditions included in the analysis, afflicting about 0.25 percent of the American population, but it received the highest amount of funding, totaling $77.5 million over five years, researchers found. Celiac disease, which affects around 1 percent of Americans, received the lowest amount of research money, at around $15.4 million over the same period.
“NIH funding is restricted historically right now, and it’s now challenging for researchers to receive funding in almost any field,” senior study author Dr. Daniel Leffler of the North American Society for the Study of Celiac Disease said in a telephone interview.
“When there are restrictions on funding, decisions have to be made and projects have to be prioritized over others,” said Leffler, who also directs clinical research at the Celiac Center at Beth Israel Deaconess Medical Center in Boston. “In the end, it’s all taxpayer dollars, and we should have transparency about which areas are funded and why.”
Leffler and colleagues analyzed National Institutes of Health research grants for six GI disorders: celiac disease, irritable bowel syndrome (IBS), Crohn’s disease, eosinophilic esophagitis, Barrett’s esophagus and non-alcoholic fatty liver disease (NAFLD). The database they used, known as Research Portfolio Online Reporting Tools, was launched in late 2009 to create public accountability, the authors note.
Using other sources, they determined how many people in the U.S. are affected by each disease.
The team found that trends in funding remained stable during the five-year period, with Crohn’s disease consistently awarded the highest amount of money, at around $16 million per year, followed by Barrett’s esophagus at $13 million per year. NAFLD was awarded $7 million per year, followed by irritable bowel syndrome at $5 million per year and eosinophilic esophagitis at $4 million per year. Celiac disease consistently received the lowest amount at $3 million per year.
There was a similar pattern in the number of research grants awarded, with Crohn’s disease receiving the greatest number, at about 40 grants per year, and celiac disease with the fewest at eight grants per year.
Eosinophilic esophagitis had the lowest prevalence in the U.S. population, at about 0.04 percent, and received the second lowest amount of NIH funding over five years, at $18.9 million. Barrett’s esophagus, like celiac disease, affects about 1 percent of the population and received $64 million over the study period.
IBS, which affects 12.5 percent of Americans, got $24.6 million and NAFLD, the most common condition, afflicting 18 percent of Americans, received a total of $33 million.
Correlating research funding to prevalence of a disease could be misleading, said Dr. Gilaad Kaplan of the University of Calgary in Alberta, Canada, who wasn’t involved in the study.
A disorder like Crohn’s disease, for example, is predominantly diagnosed in young adults who experience debilitating symptoms. Since there is not a cure, these patients require lifelong medication to suppress their immune system and often undergo operations to remove parts of their bowels, Kaplan told Reuters Health. Other GI disorders may not carry the same burden or expense.
One limitation of the study, he added, is that there could be overlap among disorder names. Inflammatory bowel diseases, for example, often include Crohn’s and ulcerative colitis, and research on Crohn’s is relevant to ulcerative colitis, so prevalence numbers could be higher for that category.
“By no means should you take my comments as suggesting that celiac disease deserves less funding that Crohn’s disease,” Kaplan said by email. “But the decision of funding agencies like NIH should not be based on prevalence in isolation of other factors.”
As NIH funding remains restricted, researchers and GI advocacy groups should look at all possible sources of funding, including industry, foundations and other federal sources such as the Department of Defense, said Dr. Gregory Cooper of the University Hospitals Cleveland Medical Center in Ohio, who wasn’t involved in the study.
“Funding for biomedical research is chronically lower than it ought to be,” he told Reuters Health by email. “Patient advocacy groups are important in lobbying for additional funding, and disease-specific foundations can help support research.”
SOURCE: bit.ly/2y7srpz Gastroenterology, online September 1, 2017.