The Costs of Inflammatory Bowel Disease (IBD)

The inflammatory bowel diseases (IBD), including Crohn’s disease, ulcerative colitis, and indeterminate colitis, are chronic illnesses for which there currently is no cure. Because of the lifelong nature of these diseases, many people need continuous treatment throughout their lifetime. Treatments can include hospitalizations, medications, and surgery. The cost of IBD to patients—direct costs such as those from treatments and indirect costs such as those from lost time at work or school—were not well studied or understood. An analysis of more than 50,000 people living with IBD yielded much more information about the true costs these diseases have to patients and to society.

It stands to reason that a chronic illness will incur costs that include those for treatment as well as those from lost time at work. Soft costs, such as time lost with family and friends are more difficult to quantify and were not included in the study.

Having care available for IBD that is cost-effective as well as appropriate is a main driver for all parties involved, including patients, healthcare providers, and insurance providers. However, costs for treating IBD have been rising in recent years. Some of these are attributed to the overall increased costs associated with the United States healthcare system, but some of them are considered to be specific to the treatment of IBD.

Study Methods

The researchers used the Optum Real-World Data to gather information. Data between the years of 2007 and 2016 for patients who had insurance (which included commercial insurance or Medicare Advantage) in the United States were included. Patients needed to be insured for two years (for 12 months before diagnosis and 12 months after) for their information to be included in the analysis.

In order to get a true picture of the costs of IBD, comparisons were made between the data gathered from patients with IBD and patients without IBD. Patients from each group were matched one-to-one for age, gender, insurance type, year, and length of follow-up care.

For the purposes of estimating lost wages, average wages from the Bureau of Labor Statistics were used. The makeup of the 52,782 IBD patients included in the study were 29,062 with ulcerative colitis and 23,720 with Crohn’s disease and 54% were female.

Cost to Insurance Companies

The costs that were found to be the most important drivers were those from particular treatments (biologics, opioids, or steroids), visits to the emergency department, and those associated with relapsing disease, anemia, and mental health.

The authors highlight that costs were rising for patients with IBD after 2013 and that the first year after diagnosis was associated with the highest cost (at a mean of $26,555). A spike in costs is seen again at about seven to eight years after an IBD diagnosis (to about $25,000) but the authors note this could also be related to health costs associated with normal age-related conditions. Costs were also up to 46% higher for pediatric patients and elderly patients with IBD.

Cost to Patients

Out-of-pocket costs for patients with IBD were found to be $2,213 per year—more than two times what they were for those patients who did not have IBD ($979). The authors note that this does not include insurance premiums. For that reason, it’s likely to be an underestimate of the true out-of-pocket costs.

Lost Wages

The study made certain assumptions about the costs associated with time away from work to take care of health-related needs. Seeing a doctor in the office was estimated at three hours, emergency room visits were eight hours, and outpatient visits were four hours. Because researchers didn’t have data on employment, estimates were used to calculate wages. People with IBD may lose as much as three times as many wages from lost time at work than those who do not have IBD.

The Cost of Related Conditions

Anemia is a common condition that may affect those who have IBD. The study found that the cost associated with patients who also had anemia in addition to IBD was 8% higher than it was in those who did not have anemia. Being diagnosed with a mental health condition or receiving prior treatment from a mental health professional were also associated with increased costs.

Treatments (Medications and Hospital Stays)

Perhaps not surprisingly, the more medications needed to treat IBD, the higher the costs. However, there were also some trends that included costs for patients receiving 5-aminosalicylic acid (5-ASA) medications or non-steroidal anti-inflammatories (NSAIDs) that were initially low but increased over time. Antibiotics were associated with higher costs in the first year that lowered over time. Receiving corticosteroid medications or opioids or being dependent on steroids was associated with higher costs.

Patients receiving opioids had higher rates of emergency room use and were hospitalized more frequently than those who did not receive opioids. Even one visit to the emergency room was associated with costs for that year being twice as high and costs for the next year being 6.4% higher.

A Word From Verywell

Not much was previously known about how much it cost to treat IBD or how much it cost people who live with the disease. Having a chronic illness will obviously be associated with costs but the extent of the costs due to IBD are arguably quite high.

The study provided a lot of information about the cost of treating and living with IBD, but there’s still more information to come. The data is still being analyzed and the authors expect to publish more studies in the future that break down certain aspects, including treatments and related conditions.

While it’s important to know the costs of IBD, it remains to be seen how knowing this information affects patients in their day-to-day lives. IBD is already associated with a significant amount of stigma and there could be concerns about how employers and insurance companies view this information and use it to make assumptions about people who live with IBD. Cost-cutting is important, but suggestions moving forward should make sure that they do not compromise care. There’s more work to be done from all the stakeholders and patients will want to closely watch how this issue continues to unfold.