NORD, the leading, independent advocacy organization committed to helping the 1 in 10 Americans with rare diseases, applauds the Senate for authorizing medical foods coverage in the National Defense Authorization Act for Fiscal Year 2017 (S.2943) on Tuesday. The bill now must be harmonized with the House version passed last month.
“This is an important step to receive large payor coverage of medical foods, and we hope it will accelerate getting other payors to cover the services,” said Martha Rinker, vice president of public policy at NORD. “On behalf of the 30 million Americans we represent, NORD applauds and thanks Chairman John McCain, Ranking Member Jack Reed, and Senator Lindsey Graham of the Armed Services Committee for their leadership and commitment to providing military families with the best care possible.”
Medical foods are often medically necessary, pharmaceutical grade treatments for the safe and effective management of many digestive and inherited metabolic disorders. When these diseases, such as Crohn’s disease, Phenylketonuria, or Eosinophilic Esophagitis, are left unmanaged or untreated, the medical consequences are significant, often permanent and costly. The implications of denied or delayed access to medical foods in pediatric populations are particularly profound. In severe cases, the outcome can be surgery, hospitalization and even death. Children with unmanaged disease also suffer emotionally and socially.
Until now, coverage of medical foods was routinely denied by TRICARE, a health care program of the United States Department of Defense Military Health System. NORD, several of its patient organization colleagues, and physician groups such as the pediatric gastroenterologists, met with the Armed Services Committee and advocated on behalf of TRICARE enrollees and families who rely on medical foods for the treatment and management of their rare diseases.
Rinker continued: “Most private and public payors historically have not covered medically necessary food for digestive and inherited metabolic disorders, or would only cover medical foods delivered through a feeding tube or device. These major treatment modalities are unaffordable to many families when coverage is denied. We celebrate this win for the rare disease community and will continue to advocate for broader coverage until all individuals have access to the same benefit.”
Learn more about medical foods on the NORD website at https://rarediseases.org/issues/.