The Medical Nutrition Equity Act (S1194 and HR2587) is currently being considered by several congressional committees. To pass this law, we need support from the committee members. Please review & contact the committee members for your state to express your support. Key talking points include:
- Medical foods are the treatment for Inherited Metabolic Disorders, preventing disability and death
- The medical foods required to treat PKU cost approximately $12,000 - $15,000 per year, which is far beyond the means of most every PKU family. The cost of not treating PKU, however, is much greater. Caring for an untreated PKU patient is at least 8 times more expensive.
- Insurance coverage is not in line with medical guidelines (many PKU adults and elderly with PKU are suffering and continue to face brain damaging levels of phenylalanine without proper treatment); children are also routinely denied coverage for PKU treatment
- Children born from untreated mothers with PKU may have a condition known as "maternal phenylketonuria syndrome", which can cause small brains, intellectual disabilities, birth defects of the heart, and low birth weights.
- The current patchwork of mandates across the U.S. is not working
- Coverage for medical foods for those with Tricare passed in the 2017 NDAA (National Defense Authorization Act) w/ bipartisan support
- Senator Casey has officially requested a CBO score for the bill