Policy implications related to insufficient medical coverage for medical foods, modified low-protein food and nutritional supplements for patients with heritable disorders

Background: Medical nutrition therapy using medical foods, modified low-protein (LP) food and nutritional supplements has remained the mainstay of treatment for patients with inborn errors of metabolism (IEM) primarily diagnosed and treated subsequent to the public health newborn screening (NBS) program.¹ Although these patients require ongoing nutrition therapy, there is no federal mandate for coverage of medical foods and nutritional supplements.^2,3 Barriers in access to appropriate nutritional support leads to adverse health outcomes and compromises efforts of the U.S. Department of Health and Human Services to reduce morbidity and mortality of newborns and children related to heritable disorders.^4,5 Methods: Surveys followed by phone interviews were conducted with NBS coordinators and dietitians from each state and territory in the United States Southeast Region to assess the status of legislation regarding medical coverage for medical foods, modified LP food, and nutritional supplements. Data was analyzed using descriptive statistics. Results: Most states have no laws regarding the coverage of medical foods and nutritional supplements. Few states offer very limited forms of supplemental funding for these items, including WIC, Medicaid and grants, and most alternative funding was for children under the age of 18. Conclusion: Although some supplemental funding for medical foods and nutritional supplements exists through state programs, there is a significant gap in coverage for the underinsured and low-income adults with IEMs, potentially leading to unmet health needs, delays in appropriate care and unnecessary illness and hospitalizations. There is a need for legislation which assures national coverage to address this critical issue.