2016 Community Benefit Report CHAI_160088756_2016 Community Benefit Report_FIN - - Page 14

2016 COMMUNITY BENEFIT REPORT Speaking Up for Kids Policy Advocacy Ensures Medical Foods Coverage for Kids Leah Jensen, 11, was diagnosed with eosinophilic esophagitis (EoE) and severe food allergies at 15 months old. She was having so many difficulties with eating, sleeping and inexplicable pain that her doctor removed all foods from her diet and placed her exclusively on elemental formula. This formula, also known as medical food, was an amino acid-based complete nutrition she could tolerate without reactions or immune responses. Children with EoE, and conditions like it, cannot eat foods without experiencing extreme symptoms, including severe, persistent and debilitating abdominal pain, vomiting, life-threatening shock and painful rashes. They rely on this elemental formula to survive. “Once starting on the formula, Leah began to gradually improve, gain weight and sleep. She was no longer constantly sick,” says Monica Jensen, Leah’s mom. Leah started seeing Dr. Glenn Furuta and Dr. Dan Atkins, director and co-director of the Gastrointestinal Eosinophilic Diseases Program at Children’s Hospital Colorado, for management and treatment of her EoE when she was two and a half years old. However, in December of 2015, the company Leah’s dad worked for changed insurance carriers. “We had been told that my daughter’s formula would be covered, but suddenly the new insurance refused coverage because it wasn’t her entire diet,” says Monica. Families whose insurance denies coverage often end up spending anywhere from $6,000-$14,000 a year for their child’s medical formula. For the 180 families in Colorado who had private health insurance that refused to cover medical foods, this meant having to make deep and significant financial sacrifices to ensure their child could eat. “These conditions are very stressful for families,” says Dr. Atkins. “One of the things we love to do as parents is feed our children, and these children don’t tolerate food. That’s stressful, and when you add the financial stress on top, it adds another level of anxiety.” Due to the high cost of this formula, Dr. Furuta says some families would go anywhere to get it, including online. “We were concerned about the safety and quality of the formula these families were receiving.” 14 Though Leah’s insurance eventually covered the formula, her family became aware of the importance of developing legislation that could support all Colorado families living with these diseases. Leah told her story to lawmakers at the State Capitol in 2016, advocating for passage of House Bill 16-1387, which ensures that as of January 1, 2018, all Colorado health plans must provide coverage for medical formula. “Living with this disease can be difficult socially, emotionally and physically,” she said.