The cost of care for pediatric patients with inflammatory bowel disease (IBD) has become prohibitive on individual families and on society in general, and is predicted to soar to $6 trillion by 2027, said Sandra Kim, MD, at the Advances in Inflammatory Bowel Disease (AIBD) meeting on December 10.

Dr Kim is codirector of the Inflammatory Bowel Disease (IBD) Center at Children’s Hospital of Pittsburgh and an associate professor of pediatrics at the University of Pittsburgh School of Medicine.

The cost of medical care in the US is predicted to grow by 5% or more per year over the next several years, she said. “Two-thirds of bankruptcies in the US are caused by medical costs,” Dr Kim explained. In the United States, the cost of care for patients with IBD is estimated to range from $14.6 billion to $31.6 billion, of which a major portion is attributable to biologic therapies

The greatest contributor to the delay of IBD care among pediatric patients is cost, she said. Treatment with specific therapeutics is the key driver, along with emergency department use, Dr Kim stated. She noted that according to the Crohn’s & Colitis Foundation, patients with IBD experience 3-fold greater direct costs for health care.

Even higher costs are associated with childhood onset IBD, Dr Kim said. There is a 2-fold difference in the cost of care for patients with pediatric ulcerative colitis (UC) than for patients who develop IBD as adults. And lifetime costs of care are significantly higher for both UC and Crohn disease.

“Even families with good health insurance face significant out of pocket costs” for care of their children with IBD, Dr Kim reported. Middle-income families are under the greatest financial stress as they struggle to cover expenses for care while also facing the need to take time off work, perhaps incurring lost wages.

There is also a major impact on quality of life for the entire family and psychosocial strain on patients, parents, and siblings.

Health care providers also feel the strain. “There are daily battles by the health care team,”  Dr Kim said, “countless hours dealing with insurance issues, especially prior authorizations.” A survey of pediatric health care providers showed that 94% of providers said patients had suffered delays in care and significant risk of harm due to prior authorizations.

While waiting for authorizations for biologics, pediatric care givers often have to fall back on use of steroids, Dr Kim said. “Steroids are something we try to avoid but these delays make us have to fall back on them to keep patients from flaring.”

Part of the issue stems from payor policies and terminology, such as “step therapy,” she explained, “or fail first. Pick the least expensive drug without considering long-term consequences, and the end result may be more expensive.” Dr Kim mentioned the CALM study and other analyses that indicate tight control of disease by using appropriate agents, initiating therapy early, and monitoring patient symptoms and clinical markers “significantly improved time in remission, resulted in fewer hospitalizations and less absenteeism, and improved quality of life.”

The solution is advocacy, Dr Kim said. Caregivers and families must join forces to advocate for changes in health insurer policies and implement “safe step” legislation at the state and federal levels to require health plans to provide exception processes for step therapy and to require insurers to implement transparent, rapid appeals processes.

“This situation is a call to arms for the pediatric GI community,” she concluded.

—Rebecca Mashaw

Kim, SC. Cost and access to care in pediatric IBD. Presented at: Advances in Inflammatory Bowel Diseases. December 9, 2021.