Insurance Hurdles, Financial Stress for Young Adults With IBD

Credit: Adobe Stock/Prostock-studio

New research from the Crohn’s & Colitis Foundation highlights serious health care access and financial challenges facing young adults living with inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis. While IBD affects people of all ages, this national survey shows that patients aged 18 to 25 face unique barriers as they begin managing their health care independently.

The survey, published in Crohn’s & Colitis 360, included responses from more than 1,700 patients with IBD and caregivers across the United States (77% adults, 12.9% young adults and 10.1% pediatric caregivers). Participants were asked about medication access, experience with step therapy, financial concerns and disease characteristics.

Investigators compared the experiences of young adults (ages 18 to 25), older adults and caregivers of pediatric patients to better understand how age affects access to care and financial strain.

Previous research has shown that young people with IBD face difficulties during their transition from pediatric to adult care, which can result in poor treatment adherence, lapses in routine care and an increased risk of hospitalization.

One major issue the survey identified was insurance-mandated step therapy. More than one-third of young adults reported being required to try a lower-cost medication before insurance would cover the treatment their doctor originally prescribed. This occurred more often in young adults than in older patients or children, potentially delaying effective treatment and increasing disease-related stress.

The survey also found that many young adults feel unprepared to navigate health insurance. More than one in three said they were not confident about what questions to ask their insurance company when coverage problems arise. This lack of confidence may contribute to delays in care, denied treatments or unexpected costs.

Across all three groups, about half said they were “not/slightly confident” in navigating times when their insurance refused to pay for services or required step therapy.

“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,” said Laura Wingate, chief education, support and advocacy officer at the Crohn’s & Colitis Foundation. “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.”

Nearly one in five young adults (17.6%) reported taking on extra work or additional jobs to help pay for medical care or insurance related to their IBD, which was significantly more than older adults or caregivers of children with the disease (both 11%). For young adults balancing school, early careers or other responsibilities, these financial pressures can have lasting effects on well-being and disease management.

Investigators noted that the study was limited by the survey’s recruitment methods, and results may not be generalizable to the broader IBD population in the U.S. Additionally, the team did not include information on whether the young adults were dependents or primary insurance holders. Future research will focus on analyzing access to health care during the transition to adult care, especially as these patients start to manage their own insurance coverage.

Overall, the findings highlight a critical gap in support for young adults with IBD as they transition from pediatric care or parental insurance coverage to managing their own health care decisions.

“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,” concluded Ross Maltz, M.D., the study’s lead investigator and a pediatric gastroenterologist at Nationwide Children’s Hospital.