The Hidden Costs of IBD for Young Adults

New research from the Crohn’s & Colitis Foundation highlights how young adults with inflammatory bowel disease (IBD) face unique and often overwhelming challenges as they begin managing their health care independently. In a national survey of more than 1,700 patients and caregivers, young adults ages 18 to 25 were more likely than older adults or pediatric patients to encounter insurance barriers, particularly insurance-mandated step therapy, where insurers require patients to try lower-cost medications before covering the treatment their doctor originally prescribed.

In an interview with The Educated Patient, Laura Wingate, chief education, support and advocacy officer at the Crohn’s & Colitis Foundation, explained that this higher rate of step therapy among young adults is closely tied to major life transitions. Many are moving off a parent’s insurance plan, leaving school-based coverage or enrolling in job-based insurance for the first time. At the same time, they may lack experience advocating for themselves with insurers or understanding how coverage decisions are made, especially for high-cost IBD medications. This combination can create delays in treatment, added stress and confusion at a time when young adults are already balancing school, work and independence.

The survey also revealed that many young adults feel unprepared to navigate insurance denials. More than one-third reported low confidence in knowing what questions to ask when coverage problems arise. Wingate emphasized that understanding why a medication or test is denied is a critical first step. From there, patients can work with their health care team to appeal decisions, submit additional medical documentation or explore equally appropriate alternative medications that may be covered.

Financial strain emerged as another major theme. Nearly one in five young adults reported working extra hours or taking on additional jobs just to afford IBD-related health care costs — significantly more than older adults or caregivers of pediatric patients. Wingate noted that this burden can often be eased by asking providers about manufacturer copay assistance programs, charitable grants and foundation-based financial support, many of which young patients may not realize are available.

Throughout the interview, Wingate stressed that young adults do not have to navigate these challenges alone. The Crohn’s & Colitis Foundation offers insurance education tools, appeal letter templates, state-by-state step therapy protection information and personalized guidance through its IBD Help Center. These resources are designed to help young adults feel more confident, better informed and more empowered to access the care they need without sacrificing their financial stability or long-term health.

Overall, the findings reinforce a critical message from the survey: As young adults with IBD transition into managing their own care, targeted education, insurance navigation support and financial assistance are essential to prevent gaps in treatment and reduce unnecessary stress during a pivotal stage of life.