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NORD supports robust medical nutrition coverage for any condition for which it is a medically necessary component of effective treatment
Medical nutrition is defined under the Federal Food, Drug, and Cosmetic Act as โa food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.โ1 Many rare disorders require medical nutrition to prevent serious disability, allow for normal growth in children and adults, or provide adequate caloric intake. Examples of disorders that require medical nutrition include maple syrup urine disease, food protein-induced enterocolitis syndrome (FPIES) and short bowel syndrome. Medical nutrition for these and other conditions is the only viable treatment option available in many cases.
State-Regulated Insurance Coverage of Medical Nutrition
Unfortunately, insurance coverage of medical nutrition is inconsistent and varies widely depending on a patientโs diagnosis, plan type and state. Many insurers decline to cover medical nutrition because the FDA does not regulate it as a drug. Additionally, insurers may view medical nutrition as elective in nature instead of the life-saving treatment that it is. As a result, many patients who need these life-saving treatments encounter significant financial barriers. For example, the average annual cost of formula for the rare disease phenylketonuria (PKU) can be up to $12,000 depending on factors such as age.2
Some states do mandate medical nutrition coverage through their Medicaid programs. However, many states that mandate coverage of medical nutrition in Medicaid frequently have arbitrary limits based on cost, age or gender. For states that do not mandate coverage through Medicaid, a few have chosen to provide access to medical nutrition through other publicly funded health programs or provide coverage on a case-by-case basis, which can lead to highly variable access. Additionally, some states provide medical nutrition through Medicaid or a publicly funded program in practice but donโt mandate this coverage through state statutes or regulations. Coverage that is not codified into law or regulation can be discontinued abruptly and without warning, leaving patients without affordable access to needed medical nutrition products.
Also, some states require that eligible private plans provide coverage of medical nutrition, but only for inherited metabolic diseases such as PKU. More recently, states have begun to expand coverage to other conditions that require specialized nutrition. In states without comprehensive medical nutrition coverage mandates, patients are usually forced to pay for medical nutrition out-of-pocket. For costly forms of medical nutrition, this situation can leave patients without access to necessary treatment for their rare condition.
Grading Methodology
NORDโs State Report Card grades states separately on the following four separate categories and an overall state grade for Medical Nutrition was determined by taking the average of these four separate grades:
States that limited route of administration of medical nutrition, placed age or monetary restrictions on coverage, or provided medical nutrition coverage on a case-by-case basis earned lower grades than states that had no such restrictions. Similarly, states with more covered conditions (ideally providing coverage of medical nutrition whenever it is medically necessary) earned higher grades than states with fewer covered conditions.
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