Sec. 2. Findings

309 words·~1 min read·/bill/116/hr/2501/ih/section-2

A research copy — for the controlling text, always check the official state or federal source. Not legal advice.

Congress finds the following: Each year, thousands of children and adults in the United States are diagnosed with certain digestive or inherited metabolic disorders that prevent their bodies from digesting or metabolizing the food they need to survive. For them, medically necessary food, which can often be administered as an orally consumed formula, is their treatment. Without medically necessary food, these patients risk malnutrition, surgery, and repeated hospitalizations. They may suffer intellectual disability or even death.

Risks in pediatric populations are particularly profound and often severe and also include inadequate growth, abnormal development, cognitive impairment, and behavioral disorders. Specialized medically necessary food is standard-of-care therapy for these patients and is essential to preventing such outcomes. While not every person diagnosed with these conditions needs to be treated with medically necessary food for a prolonged period, it is critical that patients and their physicians be able to consider the full range of options and select the treatment that will be most effective for each patient.

Insurance companies will typically cover pharmaceuticals or biologics for treatment of some of these conditions. However, these types of treatments may not be the first-line therapy a physician would recommend, do not work for all patients, and can have undesirable risks, such as cancer or suppression of the immune system, which can increase a patient’s risk of infection. Even when an insurance company does cover medically necessary food, it often comes with the stipulation that the formula be administered through a feeding tube, which requires expensive surgery and carries additional risks for the patient.

Testing for select inborn errors of metabolism is required in all States, and more than 7,000 babies per year are diagnosed with an inherited metabolic disorder. Yet, policies on medically necessary food vary significantly and do not always make it possible for families to get sufficient nutrition for their affected children.