The Crohn’s & Colitis Foundation today unveiled exciting new research highlighting significant healthcare access challenges and financial burdens that disproportionately affect young adults with inflammatory bowel disease (IBD). The national survey, conducted by the Foundation, assessed the health care and financial experiences of three groups: young adults ages 18-25, adults ages 26-64, and caregivers of pediatric patients under 18.
The findings, published today in Crohn’s & Colitis 360are based on responses from more than 1,700 IBD patients and caregivers.
Key findings:
- Step therapy requires: Young adults (18-25) were significantly more likely to experience step-up therapy with mandatory insurance—a policy where insurance requires patients to try a lower-cost drug first and cover only what their doctor prescribed if the initial choice doesn’t work—with 35% reporting these requirements in the past 12 months—compared to only 27% of adults and pediatrics 20.
- Knowledge of insurance navigation: More than a third (35%) of young adults reported low confidence in knowing what questions to ask their insurer during coverage issues, compared to 25% of pediatric caregivers indicating greater uncertainty and need for support among young adults.
- Economic pressure and effects on employment: 18% of young adult patients worked extra jobs or increased work hours to cover health care or insurance costs for their IBD, a much higher rate than both adult (11%) and pediatric caregivers (11%).​​
The aim 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 about 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 show 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 shows that not only are younger patients at greater risk of having to jump through insurance hoops to access essential medicines, but they also face significant financial strain – often working extra jobs just to afford care.”
Laura Wingate, Chief Education, Support & Advocacy Officer, Crohn’s & Colitis Foundation
“The research highlights the need for targeted educational resources, improved insurance navigation assistance, and policy attention to mitigate the unique challenges faced by young adults with IBD,” said lead study author Ross Maltz, MD, pediatric gastroenterologist, Nationwide Children’s Hospital.
The Foundation calls on partners, advocates and the broader healthcare community to help strengthen these findings and promote equitable access to care for all age groups.
