NEHA's advocacy efforts are designed to achieve the following outcomes:
- Provide NEHA members with the skills and information they need to successfully advocate on a personal and public level.
- Ensure affordable access to appropriate providers and effective treatments.
- Make sure that policies, regulations, laws, and services help people with hemophilia live normal, productive lives.
NEHA 2013 Advocacy Goals
- Develop an Advocacy Alert Network with representatives from each of the New England states.
- Support state legislation that ensures affordable access to appropriate providers and effective treatments.
- Support National Hemophilia Foundation's national legislative agenda.
- Educate the NEHA community about the Affordable Care Act (ACA) (National Health Care law).
- Educate state officials about the needs of the hemophilia community in regards to exchanges, Medicaid expansion, and essential benefits (if the ACA is upheld by the Supreme Court).
- Provide support to members conducting personal advocacy.
NEHA 2012 SUCCESS ! Congratulations, You made a difference!
- After our Washington Days trip, Senator Shaheen from New Hampshire and Senator Reed from Rhode Island signed on to a letter supporting full funding for the Hemophilia Treatment Centers.
- In Massachusetts, H3960, An Act Relative to the Hemophilia Advisory Committee, has been reported out favorably by the Committee on Public Health and Health Care Financing and is currently sitting in the Committee on Bills in Third Reading. This is the farthest this bill has ever gone! As you may recall, this bill establishes a Hemophilia Advisory Committee made up of medical practitioners and people with bleeding disorders. The Committee would make recommendations to the Commissioners of Public Health and Insurance and MassHealth officials on a broad array of social, medical, and financial issues affecting persons with hemophilia.
- In Maine, LD1691 which caps out-of-pocket expenses for prescription drugs was signed into law.