Coverage of Medical Nutrition for Children with Urea Cycle Disorders Varies by State

Urea cycle disorders (UCDs) are genetic diseases that affect metabolism, and treatment requires either a liver transplant or medical management with a combination of drugs, low-protein diets, and medical foods such as metabolic formula and amino acid supplements. Insurance coverage of medical foods varies, though, and many families with UCD-affected children face high out-of-pocket costs for the diets their children need to manage their conditions and grow.

Anne Markus, PhD, MHS, JD, Professor and Chair of the Department of Health Policy and Management at the Milken Institute School of Public Health, led a team that analyzed federal and state policies regarding insurance coverage of medical foods for children with UCDs. With colleagues Agnes Halm-Lutterodt, Victoria Andriessen, and Maya Gerstein, Markus examined coverage requirements in federal programs (Medicaid, Medicare, and the TRICARE program for uniformed services members and their families) and in states.

Every state operates a newborn screening (NBS) program that can identify UCDs in infants, and many states require Medicaid and/or private insurance coverage for treatment of conditions identified through NBS. However, not all states’ programs screen for all UCDs. The analysis found that four states — California, Connecticut, Massachusetts, and Tennessee — screen for six types of UCDs, but ten states screen for only two. States also have different requirements for the scope of products that Medicaid and private insurers must cover (e.g., many states require coverage of formula, and fewer require coverage of supplements) and different permissible cost-sharing in private plans. The team prepared infographics for individual states showing what each one screens for and requires coverage of (see links below).

The analysis also describes recent federal and state legislative activity to improve coverage of medical nutrition. For instance, the Medical Nutrition Equity Act, reintroduced in the 117th Congress as H.R. 3783/S. 2013, would create a universal federal coverage mandate for six UCDs and specify that plans must cover medically necessary food and vitamins.

"Our earlier research found that families often face high out-of-pocket costs for care that is medically necessary for their children who have these rare diseases,” said Markus. “In addition to disseminating our findings about how caretakers decide which treatments to pursue for their children, I wanted to provide a resource those caretakers can use to learn what their health insurance does or doesn’t cover—something that’s influenced by state as well as federal policies.”

The analysis is a companion to a project funded by the Patient-Centered Outcomes Research Institute (PCORI) that compared the effectiveness of liver transplant to medical management for children with UCD. Work by Agnes Halm-Lutterodt and Victoria Andriessen, who were MPH students at the time, was supported by the GW Center of Excellence in Maternal and Child Health’s inaugural MCH Policy Scholarships.

Links: Analysis, Appendix