Young Adults With IBD Face Greater Healthcare Access Challenges, Financial Burdens

New research from the Crohn’s & Colitis Foundation is shedding light on disproportionate healthcare access and financial burdens faced by young adults with inflammatory bowel disease (IBD).1

The analysis of data from > 1700 IBD patients and caregivers suggest young adults with IBD face more healthcare access challenges and financial distress compared to adults and pediatric patients, highlighting the need for more resources and support navigating healthcare access for this patient population.1

“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,” Laura Wingate, Chief Education, Support & Advocacy Officer at the Crohn's & Colitis Foundation, said in a statement.1 “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.”

To assess whether young adults with IBD experienced more healthcare access challenges and financial distress compared to adults and pediatric patients, the Crohn’s & Colitis Foundation developed and administered a 52 question electronic, US-based survey on medication access, experience with step therapy mandates, financial barriers to obtaining medications, and disease and demographic characteristics.1

The survey was developed in collaboration with Mathematica and a stakeholder group of medical advisors, patients with IBD, and caregivers. Survey questions were modified from existing survey instruments, including the National Health Interview Survey, Consumer Assessment of Healthcare Provider Surveys, and the Kaiser Family Foundation/Los Angeles Times Survey of Adults with Employer-Sponsored Health Insurance.1,2

It was conducted via an online survey platform and fielded from February through June 2023 for a total duration of 13 weeks. It was only available in English and open to anyone who accessed the survey link.1,2

Previous survey results showed patients on advanced specialty medications, < 65 years of age, or on employer insurance experienced significantly greater issues with insurance barriers to accessing medications and coverage of medically necessary tests/treatments. Additional disparities were observed for patients residing in areas of concentrated poverty.2

The present analysis sought to assess differences across patient age groups, including caregivers on behalf of pediatric patients < 18 years, young adult 18-25 years, and adult 26-64 years.1

Of 1781 respondents, 1372 (77%) were adults, 229 (12.9%) were young adults, and 180 (10.1%) were pediatric caregivers. Most respondents were female in all age groups.1

Investigators noted ethnicity and race varied significantly, with young adults reporting the greatest percentage of Hispanic respondents (7.7%) and the lowest percentage of Black respondents (1.4%). The young adult group additionally had the lowest rate of health insurance coverage (96%), similar to the overall US population for this age group.1

No significant differences were reported among the groups regarding medication access issues secondary to health insurance. Among respondents who experienced significant delays, there was no difference between groups as related to adverse health events or negative effects on daily activities. However, investigators noted the young adult group (35%) was more likely to experience step therapy mandates compared to adult (27%) and pediatric caregivers (20%) groups.1

Further analysis revealed the young adult group demonstrated lower confidence in knowing which questions to ask their insurance provider when experiencing coverage issues compared to the pediatric caregivers' group (35% vs 25% were “not confident at all”). Additionally, the young adult and adult groups reported being less assured in their healthcare provider’s ability to obtain timely insurance medication approval compared to the pediatric group.1

Across all 3 groups, nearly 50% of respondents expressed “not/slightly confident” in navigating situations when insurance refused to pay for services or mandated step therapy.1

Of note, all age groups reported high rates (40-47%) of experiencing ≥ 1 financial barrier related to IBD care, with adults (30%) being more likely to face difficulties paying IBD-related medical bills compared to the pediatric caregivers' group (21%) (P = .02). Both young adults (14%) and adults (14%) were more likely to borrow money from friends or family to pay for IBD-related medical bills than the pediatric caregivers' group (5%) (P <.01), and young adults (17.6%) were more likely to work an extra job or work more hours to pay for IBD-related medical bills compared to pediatric caregivers (11%) and adult (11%) groups (P <.05).1

“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,” lead study author Ross Maltz, MD, a pediatric gastroenterologist at Nationwide Children’s Hospital, said in a statement.1

References

1. Crohn's & Colitis Foundation. Crohn's & Colitis Foundation survey reveals more than 1/3 of young adults with IBD face step therapy insurance barriers. January 6, 2025. Accessed January 6, 2025. https://www.eurekalert.org/news-releases/1111249

2. Jordan AA, Bhat S, Ali T, et al. Healthcare Access for Patients With Inflammatory Bowel Disease in the United States: A Survey by the Crohn’s & Colitis Foundation. Inflammatory Bowel Diseases. https://doi.org/10.1093/ibd/izae237