NORD supports robust medical nutrition coverage for any condition for which medical nutrition is a medically necessary component of effective treatment.
Medical nutrition is defined under the Federal Food, Drug, and Cosmetic Act as “a 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.”¹ Many rare disorders require medical nutrition to prevent serious disability, allow for normal growth in children and adults, or provide adequate caloric intake. A few 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, medical nutrition is expensive and often not covered by insurance. 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 Many insurers decline to cover medical nutrition because 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.
Insurance coverage of medical nutrition for special dietary use is inconsistent and varies widely depending on a patient’s diagnosis, plan type, and state. Some states require that eligible private plans sold within their state 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. Disorders such as eosinophilic esophagitis or FPIES require highly specialized nutritional products in order to be properly treated. These treatments can be lifesaving, but patients still encounter financial barriers.
Some states also mandate coverage through their Medicaid programs. 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 high variability in access). States that mandate coverage of medical nutrition in Medicaid frequently have arbitrary limits based on cost, age, or gender.
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 with a devastating decision of whether to pay the mortgage or buy the critical nutrition products required for their condition.
The Medical Nutrition Equity Act
NORD also advocates for improvements in coverage at the federal level since states lack the authority to mandate coverage under federally regulated plans governed under the Employee Retirement Income Security Act (ERISA). NORD supports passage of the Medical Nutrition Equity Act (MNEA)³ at the federal level to ensure patients have access to their medically necessary treatment in Medicaid, the Children’s Health Insurance Program (CHIP), Medicare, the Federal Employee Health Benefit program, and federally regulated private insurance. If passed, this law would dramatically improve medical nutrition coverage for patients across the nation.
2020 was an unprecedented year with serious financial implications for state governments. As a result, there have been many changes in medical nutrition coverage requirements and programs across the states, and several states have received different grades from previous years. NORD will be closely monitoring state medical nutrition policy in hopes that states will restore these essential policies and programs as they recover from the COVID-19 pandemic.
NORD’s State Report Card grades states separately on the following four categories and an overall state grade for Medical Nutrition was determined by taking the average of these four separate grades:
States that limited the administration of medical nutrition (via tube, formula only, etc.), 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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