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Healthcare Costs Pinch the Pocket


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Celiac disease patients pay two to four times more for medical care


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By Amy Ratner, Beyond Celiac Medical and Science News Analyst

Gluten-free food isn’t the only thing that costs celiac disease patients more, according to a recent study that looked at healthcare expenses associated with the disease.

Researchers found those diagnosed with celiac disease had healthcare costs between two and nearly four times that of healthy controls, depending on whether their celiac disease was completely or partially controlled.

“This study highlights the additional healthcare resource use and costs associated with celiac disease on top of gluten-free-diet costs,” said Stefano Guandalini, M.D., founder and medical director of the University of Chicago Celiac Disease Center. “It focuses on the costs borne by insurers, as well as the medical burden of celiac disease for patients.”

The economic burden of celiac disease, as well as the fact that patients continue to have symptoms even if they follow a gluten-free diet, point out the need for better treatments, researchers noted.

The high cost of gluten-free food is evident whenever those with celiac disease go to the grocery store, and a 2007 Columbia University study found that gluten-free food costs four times as much as food that’s not labeled gluten-free. But the impact of the disease on healthcare costs has often been overlooked.  

What medical claims show

A team led by Guandalini analyzed costs incurred by more than 12,000 patients with celiac disease selected on a random date from the OptumHealth Reporting and Insights database. The database contains medical and pharmacy claims and eligibility information for more than 18 million people who are privately insured through their employers, including primary subscribers and their covered beneficiaries. It is often used for retrospective studies related to medical costs.

Celiac disease patients were matched one-on-one with controls based on factors including age, sex, region and employment status to estimate the excess healthcare costs they incurred compared to those who don’t have the condition.  Average all-cause costs were more than $12,000 for those who had celiac disease compared to about $5,000 for controls.

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Definition: All cause costs: Any healthcare cost for any condition being treated, include inpatient stays, emergency room visits, outpatient visits, doctor and nutritionist visits and prescription drugs..

Patients’ data was further analyzed based on whether their celiac disease was well controlled or not. The study defined those who had controlled celiac disease as being in remission. This included those who were not hospitalized or had not visited the emergency room during the study period and had no more than one outpatient and no more than one dietitian visit in the same period.

All other patients were defined as being in partial remission and not well controlled. Partial remission can be traced to unintentional gluten ingestion or a lack of response to the gluten-free diet, the study noted.

The remission definitions were based on whether patients used healthcare resources more often than is expected as recommended by the American College of Gastroenterology guidelines for management of celiac disease. These guidelines call for an annual doctor visit beginning one year after diagnosis and an appointment with a dietitian if a patient is not responding to the gluten-free diet.

In the first year, the guidelines call for two follow-up physician visits. The study analysis could not differentiate newly diagnosed patients, which might have affected some cost comparisons, but different levels of celiac disease severity were captured because patients were selected randomly, researchers wrote.

It is often assumed that patients who are managing celiac disease with a gluten-free diet have the condition under control, don’t suffer symptoms or have other medical conditions and don’t use significant healthcare resources, the study said.

 “However, results of this real-world study indicate that 16 percent of all celiac disease cases have partial remission, and as a consequence, these patients are using healthcare resources and incurring costs,” researchers wrote. “These findings suggest an unmet need for effective treatment.”

The controlled group, which accounted for 83 percent in the study, had average all cause medical costs of about $9,000 while those in the uncontrolled group incurred costs of about $15,000. Medical costs accounted for the majority of healthcare expenses measured.

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Definition: All cause medical costs: Outpatient costs and hospitalizations but not prescription drugs.

More doctor and emergency room visits

When costs directly related to celiac disease were broken out, they totaled nearly $700 and accounted for 7 percent of all cause medical costs for those in remission. For those in partial remission, the total was nearly $4,200, or about 27 percent.

Outpatient care, including gastroenterologist and dietitian visits, accounted for most of the cost for patients with well-controlled celiac disease, while hospitalization and emergency room visits resulted in a greater portion of additional costs for those who were not well controlled. Researchers said these visits were presumably related to a higher prevalence of other chronic diseases associated with celiac disease, as well as management of celiac disease symptoms.

In fact, the economic burden of celiac disease is comparable to other serious autoimmune conditions, according to the study. And the average annual all-cause direct costs of patients with uncontrolled celiac disease exceeds those of patients with ulcerative colitis.

Guandalini said the most important takeaway from the study is the fact that celiac disease comes with a “high economic burden” that is even greater for patients who don’t have the condition under complete control. Evidence of the economic burden could be considered by the U.S. Food and Drug Administration as part of a package demonstrating unmet needs of celiac disease patients when the agency considers whether to approve a drug to treat the condition, Guandalini said.

Results of the study were published in the journal, Digestive Diseases and Sciences, and presented preliminarily at Digestive Disease Week in 2015.


You can help researchers develop better treatments for celiac disease that would drive down the cost of healthcare costs by signing up for the Beyond Celiac Research Opt-In here.



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