The current baby formula shortage has rocked the lives of American families, as parents and caregivers across the country struggle to find the formula they need to feed their children. Media coverage has highlighted the stories of desperate parents driving hours from their homes to find formula or being forced to pay double or triple the usual cost of formula as online sellers price gouge amid the crisis. The intense stress of being unable to get the formula your child desperately needs is new for many families, but those with loved ones who rely on specialty formula or other medical nutrition products are all too familiar with the feeling.
The term “medical nutrition” refers to foods or formulas that are prescribed by a physician and specifically created to meet a patient’s highly specialized dietary needs. Many rare disease patients require medical nutrition because their condition makes it impossible to survive on regular food or over-the-counter formula alone. For example, patients with the metabolic disorder isovaleric acidemia (IVA) lack the enzyme necessary to break down the amino acid leucine, resulting in a toxic buildup of chemicals in the blood. Since leucine is found in protein, patients with IVA must limit their protein intake to as little as one gram per kilogram per day. This can make it impossible to meet the body’s demands without supplemental medical nutrition products free of leucine, not only in infancy, but throughout life. Other conditions that may require medical nutrition include complex digestive and malabsorption problems, metabolic disorders, serious allergic conditions, and intestinal malformations.
While the current shortage is very serious, it is being addressed at the highest levels of government. The supply will be replenished in time, and access to formula will be restored for families with healthy children. This is not necessarily the case for patients who rely on medical nutrition. Medical nutrition products are extremely expensive, with formula for some metabolic conditions costing as much as $6,500 per month. Despite medical necessity, insurance is not required to cover these costs and many insurers decline to do so. This means that many patients and families have no choice but to pay for their medical nutrition entirely out of pocket. The cost burden forces some patients to forgo their medical nutrition products and suffer health consequences, which can include malnutrition, brain damage, and developmental delays.
Some states have passed laws mandating coverage of medical nutrition products, but insurance coverage of medical nutrition varies widely depending on a patient’s diagnosis, the insurance they have, and the state they live in. Some states require that eligible private plans sold within their state provide coverage of medical nutrition, but only for inherited metabolic disorders. Some states mandate coverage through their Medicaid programs, but often include arbitrary limits based on cost, age, or gender. Others have chosen to provide medical nutrition for free or with a discount through publicly funded state programs, but these programs are seldom codified into law and can be easily discontinued without warning. Most importantly, state laws do not apply to health plans regulated by ERISA, the federal law governing most employer-based insurance – the medium through which most Americans are insured. You can learn more about each state’s medical nutrition laws in NORD’s State Report Card, which is updated each January.
The current formula shortage highlights the critical importance of formula for those who need it to meet their nutritional needs. However, addressing the shortage alone will not mitigate the significant financial barriers that patients who depend on medical nutrition regularly face. Now is the time for Congress to take action and ensure patients who rely on medical nutrition are able to access their medically necessary treatment by passing the Medical Nutrition Equity Act (H.R. 3783/S. 2013). Championed by Representatives Jim McGovern and Jaime Herrera Beutler in the House of Representatives and Senators Bob Casey and Joni Ernst in the Senate, this bipartisan legislation would mandate private and public insurance coverage of medically necessary medical nutrition products for patients with certain medical conditions. Passing the bill would lift a huge weight off the shoulders of patients who rely on these products.
Contact your elected officials today and urge them to support the Medical Nutrition Equity Act: https://rarediseases.org/advocate/take-action-locally/take-action/#/114
