Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD. It is being sponsored by Representative John Delaney (D-MD) and Representative Jaime Herrera Beutler (R-WA) in the House (HR#2587) and by Senator Bob Casey (D-PA) and Senator Chuck Grassley (R-IA) in the Senate (S#1194). We urge our membership to contact their members of Congress and ask them to support this bipartisan bill.

The MSUD Family Support Group recently signed on with Patients & Providers for Medical Nutrition Equity, a coalition formed to build bipartisan support of this legislation. The coalition wrote a letter to the four Congressional co-sponsors in late February, detailing the needs of those with digestive or inherited metabolic conditions, the challenges they face in securing proper nutrition, and the dangers which occur when medical foods are not covered by insurance. The coalition will meet with the cosponsors in late-March to further discuss the needs of those who require medical nutrition and the Act.

RARE Act

On February 28th, Rare Disease Day, Congressmen Andre Carson (D-IN) & Ryan Costello (R-PA) introduced the Rare Disease Advancement, Research, and Education (RARE) Act.This Act would address some of the commonalities seen by the Rare Disease Community, aiming to improve rare disease treatment, research, and diagnostics. If enacted, this bill would provide for:
  1. Rare Diseases Clinical Research Network/Centers of Excellence - The RARE Act would enhance an existing and successful program of the National Institutes of Health (NIH), the Rare Diseases Clinical Research Network (RDCRN). This unique Network is made up of 21 research ‘centers of excellence’ studying rare diseases in an interdisciplinary way, working with patients and others on clinical studies and other research. The RARE Act would increase and extend the RDCRN’s funding authorization.
  2. Surveillance of Rare Diseases - The RARE Act would require the Centers for Disease Control (CDC) to create a National Rare Disease or Condition Surveillance System. Modelled off of similar systems for other conditions, this formalized infrastructure would fill critical gaps in tracking rare disease data, helping researchers to understand commonalities between diseases.
  3. Health Professionals’ Awareness of Rare Diseases - The RARE Act would require the Agency for Healthcare Research and Quality (AHRQ) to expand and intensify its work to ensure that health professionals are aware of rare disease diagnoses and treatments.
  4. Report - The RARE Act would require the National Academies of Sciences, Engineering, and Medicine to update its 2010 report “Rare Diseases and Orphan Products: Accelerating Research and Development,” to evaluate rare disease efforts and make further recommendations to policymakers.