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.

Grassroots 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, 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.


What do I need to know about...

What do I need to know about Step Therapy?

In August 2018, the Centers for Medicare & Medicaid Services (CMS) issued a guidance allowing Step Therapy under Part B in Medicare Advantage Plans. Step Therapy, appropriately labeled “Fail First,” is an approach that too many health-care providers and companies impose on patients to save money on costs. However, it can also be harmful to patients, potentially leading to extended periods of illness, significant unnecessary follow-up visits and time waiting for this and all too often more complicated downstream medical issues.

This document identifies certain outstanding questions and concerns related to the Centers for Medicare & Medicaid Services (CMS) August 7, 2018 memorandum to Medicare Advantage (MA) organizations regarding “Prior Authorization and Step Therapy for Part B Drugs in Medicare Advantage,” as well as follow-up “CY 2019 Step Therapy Q&A” issued by CMS on August 29, 2018.

To view this document, please click the button below: