Congress Must Pass the Medical Nutrition Equity Act for People Like My Daughter

Medical nutrition is a life-sustaining necessity for many Americans of all ages.

That is why my husband and I recently brought my 4-year-old daughter, Savannah, to Capitol Hill to share our family’s story and to convey my support for the Medical Nutrition Equity Act (S. 1194/H.R. 2587). 

Savannah has FPIES, Food Protein Induced Enterocolitis Syndrome. FPIES is a severe allergy that affects predominantly very young children. In Savannah’s case, it made her allergic to the protein in food, all food. Until nearly age 4, Savannah lived almost exclusively on an amino acid-based formula, Neocate. Without that formula, she would not be here today. She would have starved or suffered life-threatening complications due to her severe allergies.

Fortunately for Savannah, she has almost entirely grown out of her FPIES now. However, across the country, countless children suffer from other disorders, diseases and inborn errors of metabolism that they may not grow out of. They need medical nutrition in perpetuity to live and be healthy.

I will be back on the Hill on June 1 to accompany the Patients and Providers for Medical Nutrition Equity Coalition, a group of patient and provider organizations that represents individuals for whom specialized nutrition is medically necessary for treatment of their digestive or inherited metabolic disorder.  We will be asking members of Congress to co-sponsor and pass the Medical Nutrition Equity Act.

There is solid precedent for this legislation. To date, 35 states have adopted laws providing some level of coverage, but that coverage is variable and why a federal floor of coverage is needed.

Further, Congress recently passed legislation to help our military families in TRICARE with this exact same issue.

Without coverage, medical nutrition is unaffordable for many families. For example, some children with Crohn’s disease require a predigested formula such as Peptamen 1.5, which, at five cans per day, can cost an average of $1,500 per month.

For many patients and their families, the out-of-pocket costs for specialized formulas are prohibitive, particularly when you consider that these formulas cost less than biologics that are covered to treat some of these conditions. Biologic therapies are not only costly, but confer medical risks, such as suppression of the immune system, which can increase a patient’s risk of infection or cancer.  

When an insurance company does cover a medical formula, it often comes with the stipulation that the formula be administered through the nose or through a tube surgically placed in the patient’s gut, which carries additional risks. For example, a gastrostomy tube can leak, cause ulcerations, or a patient may experience infection at the insertion site. In severe cases, some patients with these feeding tubes experience a perforation in the intestinal tract.  

These types of coverage policies are irrational and interfere with thoughtful medical decision making. The Medical Nutrition Equity Act would ensure coverage parity, providing patients the ability to choose the best treatment option in consultation with their physician.

This is an issue that my teenage sons refer to as a “no-brainer.” For all of these compelling reasons, I hope the legislators we meet will see it that way, too.

Kaycee Childress is executive director of Children’s MAGIC U.S. and Children’s Medical Nutrition Alliance, nonprofits that work for children and their families to offer life-saving medical nutrition support, and her children have experienced multiple conditions that drive her passion for this issue.

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