Whereas individuals with inborn errors of metabolism (e.g., ornithine transcaramylase [OTC] deficiency) require specialized nutrition for health and survival, and
Whereas 19 of the core newborn screening conditions (e.g., phenylketonuria [PKU]) on the Recommended Uniform Screening Panel (RUSP) utilize medical foods and would not be on the RUSP if it weren’t for these treatments, and
Whereas failure to treat can result in intellectual disability, stroke, or death, depending on the condition, and
Whereas this medical food is of necessity manufactured and is not a natural food, and
Whereas these products are expensive to produce for a small population, and are therefore costly, and
Whereas these products are not considered medication nor considered an essential health benefit under the Affordable Care Act despite the inclusion of screening for conditions that are treated with medical foods, and
Whereas only some Medicaid Departments provide coverage for these products, many don’t and many private insurer and self-funded insurance plans do not; be it
Resolved that the American Medical Association (AMA) shall work with legislators to draft and pass legislation mandating insurance coverage with minimal deductible or copays for specialized medical food products used to treat inborn errors of metabolism, and be it further
Resolved that the AMA shall advocate with the Department of HHS and members of Congress for the classification of specialized nutritional products for the treatment of inborn errors of metabolism as an essential health benefit under the ACA for individuals of all ages diagnosed with these conditions.
September, 2016
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