Medical foods: inborn errors of metabolism and the reimbursement dilemma

Genet Med. 2010 Jun;12(6):364-9. doi: 10.1097/GIM.0b013e3181deb2f0.


Purpose: Medical foods and pharmacological doses of vitamins are used to treat certain genetic diseases for the duration of a patient's lifetime, which necessitates life-long management of the condition and diet by the patient and a health care provider. However, payment for medical foods and health insurance coverage of medical foods is not uniform.

Methods: A survey of states' newborn screening (NBS) representatives and a review of state policies (as of 2008) were conducted to ascertain payment and insurance coverage of medical foods.

Results: According to the NBS representatives, 61% of the states provided or guaranteed medical foods for all or a subset of the population detected by NBS, whereas 82% of states provided or guaranteed medical formulas for the same population. Policies for private health insurance coverage existed in 33/50 states, and range from providing medical food for one specific metabolic condition to providing it for any NBS disorder. In addition, there is variability among states in the specificity of defining what conditions qualify for medical foods.

Conclusion: This article suggests four options, not mutually exclusive, options for addressing the patchwork of state policies regarding coverage of medical foods, ranging from amending Medicaid legislation to enacting federal legislation, or changing the Food and Drug Administration's stance on oversight of medical foods.

Publication types

  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Food, Organic / economics*
  • Humans
  • Infant, Newborn
  • Legislation, Food*
  • Metabolism, Inborn Errors / diagnosis
  • Metabolism, Inborn Errors / diet therapy*
  • Metabolism, Inborn Errors / economics*
  • Reimbursement Mechanisms / trends*