For People With IBD, Health Insurance Is an Obstacle Course to Medications and Care, Foundation Survey Finds

Inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis, is a chronic autoimmune condition requiring long-term medical care. Treatments are often costly and require regular monitoring and clinic visits. In the past decade, healthcare costs for IBD have significantly increased. Out-of-pocket costs and cost of care are now two to three times higher for patients with IBD than for those without IBD. The bulk of these costs is attributed to the use of biologics and emergency care utilization.

A 2017 Crohn’s & Colitis Foundation survey revealed that many patients with IBD encountered financial barriers to care related to insurance limitations. Consequently, these patients were more likely to utilize emergency department services. A research team co-led by Ariel A. Jordan, M.D., from the department of internal medicine at the University of Michigan Ann Arbor, and Shubha Bhat, Pharm.D., from the department of pharmacy at Cleveland Clinic Foundation, conducted an updated survey in 2023 evaluating specific healthcare barriers, focusing on socioeconomic factors and patient awareness of resources encountered by people living with IBD.

The survey results were published recently in the journal Inflammatory Bowel Diseases.

The updated survey was conducted from February through June 2023 and included 2,281 caregivers and patients with IBD. Respondents were asked questions evaluating difficulties related to IBD care experienced in the prior 12 months using the following seven variables:

Ariel Jordan, M.D.

• Medication access, such as denial of insurance coverage for a medication that was prescribed
• Medication delays, such as waiting one month or longer for insurance approval of medication
• Coverage for tests or treatments, such as insurance never or only sometimes covering a needed test or treatment
• Step therapy mandates, such as insurance requiring the patient to try and fail a different medication before covering the prescribed medication
• Financial barriers to care, such as needing to cut expenses, increase debt, or increase income in order to pay for insurance or healthcare costs related to IBD
• Financial barriers to accessing medications, such as patient not getting a medication to save costs
• Use of copay programs, such as receiving a discount for a medication through a coupon, discount card, or manufacturer assistance program

The results showed that over half of respondents (56.2%) who were prescribed medication for IBD had problems accessing their medication due to insurance issues. About 17% waited one or more months for their insurance to approve an IBD medication. About 20% of respondents who needed a test or treatment had difficulty getting their test or treatment covered by the insurance. Patients more likely to experience barriers to medication access, medication delays, and issues with coverage for tests or treatments were receiving advanced specialty medications (biologics, biosimilars, or targeted small molecules), were 64 years or younger, or had employer or union only insurance versus Medicare. Additionally, respondents more likely to experience medication delays identified as something other than White, non-Hispanic.

About 25% of respondents experienced step therapy mandates. Of these, 85.4% had adverse health outcomes due to a delay or inability to obtain their prescribed IBD medication. Patients more likely to experience adverse health outcomes resulting from step therapy mandates lived in areas with concentrated poverty.

Almost one-quarter (24.4%) of participants responded that they had difficulty or were unable to pay for IBD-related medical bills. About 41% of these participants experienced at least one financial barrier or trade-off, such as increasing credit card debt, putting off vacations or major household purchases, or cutting back on food, clothing, or basic household items. Participants more likely to report financial barriers or trade-offs used an advanced specialty medication or lived in an area with concentrated poverty. Those more likely to experience no financial barriers or trade-offs were 65 years and older, had Medicare health insurance, or identified as White, non-Hispanic.

More than half (62.7%) of respondents reported financial barriers to obtaining their IBD medication. Approximately two-thirds experienced adverse health outcomes due to financial barriers.

Jordan and her co-authors concluded that, despite recent advancements in IBD care, “patients with IBD continue to experience barriers to healthcare access and treatment and financial struggles. Ongoing awareness and advocacy efforts focused on healthcare system reform and related policies to further minimize care disparities and barriers remain vital.”