title: Insurance coverage of medical foods for treatment of inherited metabolic disorders.
abstract: OBJECTIVE
  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 disorders 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.
  
  
  CONCLUSIONS
  Costs of medical foods used to treat inherited metabolic disorders are not completely covered by insurance or other resources.
authors.affiliation: Department of Pediatrics, University of Minnesota, Minneapolis, Minnesota, USA.
authors.forename: Susan A
authors.initials: SA
authors.lastname: Berry
authors.forename: Mary Kay
authors.initials: MK
authors.lastname: Kenney
authors.forename: Katharine B
authors.initials: KB
authors.lastname: Harris
authors.forename: Rani H
authors.initials: RH
authors.lastname: Singh
authors.forename: Cynthia A
authors.initials: CA
authors.lastname: Cameron
authors.forename: Jennifer N
authors.initials: JN
authors.lastname: Kraszewski
authors.forename: Jill
authors.initials: J
authors.lastname: Levy-Fisch
authors.forename: Jill F
authors.initials: JF
authors.lastname: Shuger
authors.forename: Carol L
authors.initials: CL
authors.lastname: Greene
authors.forename: Michele A
authors.initials: MA
authors.lastname: Lloyd-Puryear
authors.forename: Coleen A
authors.initials: CA
authors.lastname: Boyle
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003365:Costs and Cost Analysis; D003625:Data Collection; D004035:Diet Therapy / Q000191:economics; D019587:Dietary Supplements / Q000191:economics; D005526:Food, Formulated / Q000191:economics; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007349:Insurance, Health, Reimbursement / Q000191:economics / Q000706:statistics & numerical data*; D008661:Metabolism, Inborn Errors / Q000178:diet therapy* / Q000191:economics