Insurance coverage of medical foods for treatment of inherited metabolic disorders

Abstract

Purpose Treatment of inherited metabolic disorders is accomplished by use of specialized diets employing medical foods and medically necessary supplements. Families seeking insurance coverage for these products express concern that coverage is often limited; the extent of this challenge is not well defined. Methods To learn about limitations in insurance coverage, parents of 305 children with inherited metabolic disorders completed a paper survey providing information about their use of medical foods, modified low-protein foods, prescribed dietary supplements, and medical feeding equipment and supplies for treatment of their child's disorder as well as details about payment sources for these products. Results Although nearly all children with inherited metabolic dis orders had medical coverage of some type, families paid “out of pocket” for all types of products. Uncovered spending was reported for 11% of families purchasing medical foods, 26% purchasing supplements, 33% of those needing medical feeding supplies, and 59% of families requiring modified low-protein foods. Forty-two percent of families using modified low-protein foods and 21% of families using medical foods reported additional treatment-related expenses of $100 or more per month for these products. Conclusion Costs of medical foods used to treat inherited metabolic disorders are not completely covered by insurance or other resources.

Inborn errors of metabolism identified via newborn screening: Ten-year incidence data and costs of nutritional interventions for research agenda planning

“…A 2010 analysis by the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children [17] and others in 2010 and 2013 [18, 19], showed that insurance coverage of medical foods and foods modified to be low in protein vary depending on the state of residence for the individual/family or type of their insurance plan. Thirty-two states were found to mandate some form of private insurance coverage if certain disorders were identified through NBS.…”

“…The study revealed that 80% of children utilized at least two different types of nutritional products and almost half used three or more (e.g., a protein-containing medical food, plus foods modified to be low in protein, plus a dietary supplement) [19]. At the time of the survey, the costs of protein-containing medical foods were covered for most children through payment sources such as Medicaid, private insurance, and the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC), while payment for foods modified to be low in protein were covered for only 40% of children.…”

“…These studies documented that the full costs of medical foods and dietary supplements used to treat IEM are not covered completely by health care payers. As a result, families and individuals must bear a significant financial burden in order to provide recommended medical interventions across the lifespan for both children and adults [19]. …”

Prevention for those who can pay: insurance reimbursement of genetic-based preventive interventions in the liminal state between health and disease

“…Legislatures have utilized this tried and true approach in other preventive arenas, from mandated coverage for cancer screenings 142 to coverage for specialty medical foods and supplements recommended for individuals with inherited metabolic disorders tested for through state newborn screening programs, including phenylketonuria (PKU). 143 This approach would not prevent individuals from accessing, or clinicians and laboratories from offering, new genetic tests on the free market, but would ensure that once broad coverage for the predictive genetic test occurred, the interventions would be equitably reimbursed.…”

Medical Foods

“…1 In general, approximately 10.2 million children in the United States have special health care needs. 2 Despite the fact that many uninsured are now insured, current payment systems may impede coverage of medical foods.…”