Beyond Celiac study presented at an international celiac disease conference describes healthcare disparities in testing and diagnosis
Nearly one in four non-Hispanic Black Americans who have conditions that should lead to a test for celiac disease never get one, according to data presented by Beyond Celiac at the International Celiac Disease Symposium (ICDS).
This compared to one in five non-Hispanic white Americans, the analysis of private payer health insurance claims found.
Overall, about 19 percent of patients have a “potentially missed diagnosis” due to healthcare providers not following celiac disease testing and diagnostic recommendations, said Deb Silberg, Beyond Celiac CSO, who gave the talk.
Beyond Celiac was invited to ICDS to give the presentation, titled “Who’s missing? Highlighting US healthcare inequities in CD and their global implications.”
Silberg described US healthcare inequities in celiac disease revealed through analysis of private health insurance claims data and other scientific evidence. The data analysis was funded by Takeda Pharmaceuticals as part of a multi-stage partnership with Beyond Celiac designed to investigate equitable access to celiac disease care.
Patients with conditions that should have triggered evaluation for celiac disease were considered to have a potentially missed diagnosis if they were never for tested for celiac disease, or if they had a positive blood test but never received a diagnostic endoscopy and biopsy.
A number of medical societies, including the American College of Gastroenterology and the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition, recommend testing if a patient has one or more symptoms or conditions associated with celiac disease.
A blood test to detect celiac disease antibodies is usually the first step in a diagnosis. The diagnosis is confirmed if a follow up endoscopy and biopsy detects the intestinal damage found in celiac disease.
The data analysis revealed that at-risk men, Black people and children are groups most often potentially being missed when it comes to getting a celiac disease diagnosis.
Among all Black people in the analysis, 25 percent should have been tested for celiac disease, but did not get tested, Silberg said. There is a significant difference in getting tested, but when the test is done there is no significant difference in getting a positive result, she noted.
Additionally, children 10 and under were more likely to have a positive result when tested compared to adults 31 to 50 but were less likely to get tested.
The analysis was done using the Optum database, which includes claims from about 77 million patients across the US over a span of 20 years.
A representative 10 percent sample of the database was used. About 20 percent of this total population sample was found to be at risk for celiac disease based on their symptoms and conditions, but only 6 percent of those at risk were screened. Of those who were screened and had available results, about 64 percent screened positive. However, only 41 percent of those who screened positive received the follow up endoscopy and biopsy.
“Screening was low across the board, but we found notable screening disparities by gender, age, and race,” Silberg said.
Non-Hispanic white people were screened the most and non-Hispanic Black people were screened least. More women were screened than men. Children 11 to 20 years old were screened the most and screening decreased with age.
Silberg highlighted the diverse group of celiac disease patients who have spoken out through the Beyond Celiac Voices of Celiac Disease campaign.
“I had asked about doing a test for celiac disease, however, was told, ‘it isn’t prevalent in people of color,’” Silberg quoted one Black woman as saying as part of the campaign.
“The stories patients tell about facing healthcare disparities in their journeys to a celiac disease diagnosis are discouraging, but they are not uncommon for people of color in the United States, and potentially around the world,” Silberg said.
She also outlined other existing evidence from studies in the US that investigated healthcare disparities in celiac disease. US studies have found disparities in the results of tests used as the first step toward diagnosis, the follow-up endoscopy and biopsy that ultimately leads to diagnosis, and screening for celiac disease based on related conditions.
An earlier Beyond Celiac sponsored data analysis of public health insurance found that someone’s race, economic status and where they live can be factors in getting diagnosed with celiac disease, with being Black or Hispanic/Latino being negatively correlated with prevalence.
“Disparities in screening, diagnosis, and management affect populations with limited access to healthcare,” Silberg said. “Further investigation is essential to understand and address these disparities.”
The celiac disease symposium, organized by the International Society for the Study of Celiac Disease, is held every two years. It is designed to bring together scientists from around the world to share the latest findings from their work in celiac disease. Beyond Celiac presented talks and posters at several previous symposiums.
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