On May 20-21,
NPKUA spearheaded a lobbying effort in Washington, D.C. to educate members of Congress and/or their legislative aides about the Medical Food Equity Act (MFEA). More than 50 contacts were made over the two days to explain the logic of healthcare coverage for the treatment of PKU and other inherited metabolic disorders.
Compared to the previous versions of the MFEA introduced in the 110th and 111th Congress, the legislation that will be introduced in this Congress will be significantly different in scope. While at the Capitol in May, NPKUA was advised to remove the ERISA provision in the medical food legislation because, for some in Congress, this provision was viewed as the primary reason why the bill did not get out of committee in previous attempts for passage. Previous versions of the Medical Foods Act included language to override ERISA’s jurisdiction over self-insured plans. ERISA permits denial of coverage for medical food even if a state has passed legislation requiring coverage by group and individual plans. Without an ERISA provision, this bill will focus only on federal health programs—Medicare, Medicaid, CHIP and Tricare.
The logic behind omitting coverage by private insurance carriers is based on the assumption that if federal health programs cover medical foods, then this will (hopefully) pave the way in 2016 for more extensive coverage. In 2016, a review of essential benefits established by the Affordable Care Act will be completed. The strategy is that if federal coverage is mandated then this, in turn, will influence future inclusion of private insurance coverage in the essential benefits list.