Federal Policy Priorities

NEHA works with our national organizations–the National Hemophilia Foundation (NHF) and the Hemophilia Federation of America (HFA)–to develop our Federal advocacy agenda and strategy.

Federal policy priorities include support for:

  • federal hemophilia programs
  • blood and blood product safety
  • patient access to care
  • federally-funded research

State Policy Priorities

NEBDAC is working in each state to ensure that:

  • States continue to recognize the month of March as Bleeding Disorder Awareness Month.
  • Banning The Use of Copay Accumulator Adjusters: To ensure that people with bleeding disorders continue to have access to financial assistance from manufacturers’ co-pay assistance programs.
    • Watch this quick video to learn more about Copay Accumulator Adjusters, how they are implemented, and how they hurt patients.
    • Copay Accumulators have so far been banned in Connecticut and Maine.
  • Reform Step Therapy: Ensuring that any “fail first” provisions adopted by insurance companies will not apply to factor products, or will include patient protection provisions that ensure continued access to the product that the patient’s physician deems necessary.
    • Step Therapy reforms have been made in Maine, Massachusetts, and Connecticut.
  • Establishing Rare Disease Advisory Councils: Ensuring each state has a Rare Disease Advisory Council (or “RDAC”) that acts as an advisory body for the rare disease community in state government.
    • RDACs have been established in Connecticut, Maine, Massachusetts and New Hampshire.