Research points to major healthcare access challenges faced by young adults with IBD

The Crohn's & Colitis Foundation today revealed compelling new research pointing to major healthcare access challenges and financial burdens disproportionately affecting young adults with Inflammatory Bowel Disease (IBD). The national survey, conducted by the Foundation, assessed healthcare and financial experiences across three groups: young adults aged 18-25, adults aged 26-64, and caregivers of pediatric patients under 18.

The findings, published today in Crohn's & Colitis 360, are based on responses from over 1,700 IBD patients and caregivers.

Key findings:

• Step therapy mandates: Young adults (18-25) were significantly more likely to experience insurance-mandated step therapy- a policy where insurance requires patients to try a lower-cost medication first, and only cover the one their doctor prescribed if the initial option doesn't work-with 35% reporting these requirements in the past 12 months-compared to only 27% of adults and 20% of pediatric caregivers.​
• Insurance navigation knowledge: More than one third (35%) of young adults reported low confidence in knowing which questions to ask their insurer during coverage issues, versus 25% of pediatric caregivers indicating greater uncertainty and need for support among young adults.​
• Financial strain and employment impact: 18% of young adult patients took on extra jobs or increased work hours to cover healthcare or insurance costs for their IBD, a significantly higher rate than both adults (11%) and pediatric caregivers (11%).​

The goal of the survey was to assess the state of access to care for patients with IBD, which includes Crohn's disease and ulcerative colitis and affects approximately 1 in 100 Americans. The study was conducted as an online survey of IBD patients and their caregivers in the United States from February to June 2023.

These numbers demonstrate a clear gap in support and guidance for young adults as they transition from pediatric care and begin managing their own health insurance. The data show that not only are younger patients at greater risk of having to jump through insurance hoops to access essential medications, they also face substantial financial pressure-often working extra jobs just to afford care."

Laura Wingate, Chief Education, Support & Advocacy Officer, Crohn's & Colitis Foundation

"The research highlights a need for targeted educational resources, improved insurance navigation assistance, and policy attention to mitigate the unique challenges faced by young adults with IBD," said the study's lead author, Ross Maltz, MD, pediatric gastroenterologist, Nationwide Children's Hospital.

The Foundation is calling on partners, advocates, and the broader healthcare community to help amplify these findings and promote equitable access to care for all age groups.