Driving Legislative Change for Access to Medications

An insurance company denied coverage for an inflammatory bowel disease medication, stating that the lack of a pediatric Food and Drug Administration indication made that treatment experimental. This was legally permissible. The patient’s pediatric gastroenterologist partnered with others to create a new state law that mandated insurance coverage for medications in children when the treatment was covered for adult patients and there were data to support pediatric efficacy and safety. Coalition building included support from a hospital system, community petitions, and interactions with legislators. Family and physician testimony supported passage of the law, in effect since 2023. The patient was able to obtain the necessary treatment, and the law has been used to help other children gain access to prescribed treatments. This process can serve as a model for similar advocacy in other states.