Advocacy/Public Policy Priorities
- Increased research funding
- Urgent need for new therapeutics
- Targeted detection and family testing for Alpha-1
- Access to care, including improving health insurance benefits and reducing restrictions to public programs
- Blood product safety
- Education, outreach, and awareness
The Alpha-1 Foundation has identified the following strategies to be employed in order to achieve the above objectives:
- Federal Advisory Committee membership
- Comments in response to proposed Federal Rule Making
- Position statements on specific issues
- Congressional testimony
- Alpha-1 specific legislation
- Strategic alliances in coalitions and membership organizations to reach out to legislators.
The success of the Grassroots Advocacy Network has grown substantially through participation in efforts with other organizations, by holding Alpha-1 Congressional Briefings, bringing patients to Capitol Hill, in Washington DC, for specific Alpha-1 lobbying agendas and by building relationships with key legislators. We will continue to expand and strengthen the effectiveness of this grassroots program and address access to care barriers through the legislative and regulatory process. To be most effective, funding is needed to generate participation in state and federal lobby activities to inform elected officials and state and federal agencies about the critical needs of those with Alpha-1.