Advocacy Agenda

Advocacy/Public Policy Objectives

  • Increased Research Funding
  • Urgent Need for New Therapeutics
  • Targeted Detection
  • Addressing Access to Care, including keeping and expanding current insurance reimbursement and advocating for genetic nondiscrimination legislation
  • Increased Federal and State Funding
  • Education
  • Outreach and Awareness

View the full public policy agenda here.

Public Policy Strategies

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.

Grass Roots Advocacy

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 for specific Alpha-1 lobbying agendas and by building relationships with key legislators. In 2015, 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.