Young adults with inflammatory bowel disease face insurance delays, step therapy mandates, and rising financial stress, according to a US survey by the Crohn’s & Colitis Foundation.
Living with a chronic illness is never easy, and for young adults with inflammatory bowel disease (IBD), the challenges are especially acute. Recent findings from a national survey conducted by the Crohn’s & Colitis Foundation reveal that young adults aged 18 to 25 face unique healthcare access issues and financial burdens compared with pediatric patients and older adults.
This age group experiences higher rates of insurance barriers, step therapy mandates, and financial stress, making the transition to independent healthcare management a critical period for disease control and quality of life. Understanding these challenges is essential for patients, caregivers, and healthcare providers aiming to improve outcomes for young adults with IBD.
Inflammatory bowel disease includes two main conditions: Crohn’s disease and ulcerative colitis. Both are chronic illnesses that involve inflammation of the digestive tract and require ongoing management. Medications, frequent testing, and specialist care are essential for maintaining health and preventing disease flares.
In the United States, the cost of managing IBD is high, with prescription medications accounting for the largest portion of expenses. Biologic therapies and small molecule drugs are often necessary for controlling disease activity but are expensive and frequently require prior authorization or step therapy from insurers.
Step therapy mandates require patients to try a lower-cost medication before receiving the treatment recommended by their physician. While intended to manage costs, these requirements can cause delays, reduce treatment effectiveness, and create financial strain for patients.
Young adulthood is a transitional phase in healthcare. Many patients move from pediatric care, where parents manage appointments, insurance claims, and medication approvals, to adult care, which requires self-advocacy and independent management.
This period often coincides with changes in insurance coverage. Some young adults age out of their parent’s plan, enroll in student or employer-sponsored insurance, or become primary policyholders for the first time. Learning to navigate deductibles, formularies, and appeals processes while managing a complex condition can be overwhelming.
Previous studies have shown that this transition period is associated with lapses in routine care, lower adherence to medications, and higher rates of emergency visits and hospitalizations. The recent survey adds evidence that insurance barriers and financial stress further exacerbate these challenges.
The Crohn’s & Colitis Foundation conducted a nationwide survey of 1,781 respondents, including adults with IBD and caregivers responding on behalf of pediatric patients. Among the participants:
The survey assessed medication access, insurance barriers, confidence navigating coverage issues, and financial challenges related to IBD care.
Young adults reported higher rates of step therapy mandates than both older adults and pediatric patients. Approximately 35 percent of young adults experienced step therapy requirements, compared with 27 percent of older adults and 20 percent of pediatric patients.
Despite these challenges, overall insurance approval rates and adverse health events due to medication delays did not differ significantly across age groups. However, the prevalence of step therapy mandates among young adults underscores the unique access challenges they face.
The survey also highlighted that young adults have lower confidence in managing insurance challenges. Many reported uncertainty about which questions to ask insurance providers when coverage issues arise or how to respond to step therapy requirements.
Nearly half of all respondents, across all age groups, reported low confidence in handling situations where insurance refused payment for services. Young adults, managing their own healthcare for the first time, were particularly affected. Limited confidence in navigating insurance systems may contribute to delayed care, increased stress, and poor health outcomes.
Financial challenges are a common experience for patients with IBD. The survey found that between 40 and 47 percent of respondents across age groups reported at least one financial barrier in the past year. These barriers included difficulty paying medical bills, borrowing money, increasing credit card debt, or cutting back on essential household expenses.
Young adults were significantly more likely than other groups to work additional hours or take extra jobs to afford healthcare costs. Approximately 18 percent of young adults reported this strategy compared with 11 percent of adults and pediatric caregivers. This reflects the high financial burden placed on young adults transitioning to independence while managing a chronic illness.
The survey also found that young adults were more likely to borrow money from friends or family to cover medical bills than pediatric caregivers. Financial stress during this age may have long-term implications for credit, savings, and overall financial stability.
The transition from pediatric to adult care is a recognized vulnerable period for individuals with IBD. Pediatric care typically involves hands-on management from caregivers, whereas adult care requires independent self-advocacy.
The survey suggests that additional support is needed during this transition. Providing education on insurance navigation, appeals processes, and financial planning can help young adults maintain adherence to treatment and avoid preventable flares or hospitalizations.
Young adults with IBD face challenges that extend beyond managing symptoms. Insurance barriers, step therapy mandates, and financial stress intersect with the demands of early adulthood.
Healthcare providers, insurers, and advocacy organizations should focus on interventions that support young adults. This may include:
Supporting young adults during this critical period can reduce gaps in care, prevent delays in treatment, and improve long-term outcomes.
While the survey provides valuable insights, there are limitations. The respondents may not fully represent the broader US IBD population. The survey also did not differentiate between young adults who were dependent on a parent’s insurance and those who were primary policyholders.
Future research should explore how insurance type, care setting, and financial interventions impact access to care during the transition to adult management. Understanding these factors can inform policies and programs aimed at reducing barriers for young adults with IBD.
The Crohn’s & Colitis Foundation survey highlights that young adults with inflammatory bowel disease face unique insurance barriers and financial stress in the United States. Addressing these challenges requires coordinated efforts from healthcare providers, insurers, and patient advocacy organizations.
By providing education, simplifying access processes, and offering tailored financial and insurance support, it is possible to reduce gaps in care and improve quality of life for young adults managing IBD. Timely access to medications and effective care is critical for this age group, ensuring they can pursue education, careers, and long-term health goals without unnecessary obstacles.
This article is intended for informational and educational purposes only. It is not a substitute for professional medical, legal, or financial advice. Individuals should consult qualified healthcare providers or insurance specialists regarding personal health, treatment decisions, or insurance coverage.
