2013 Public Policy Agenda (2014 Public Policy Agenda to be issued soon)

Working Group A Policy Agenda is a list of subjects to which people inside and outside government are paying serious attention to at any given time. The following 2012-2013 Public Policy agenda has been adopted by the Alpha-1 Association and Alpha-1 Foundation Board of Directors as priority issues for 2013:


  1. Continue to address the diagnosis, treatment, and early intervention as a top priority by including the genetics message in COPD legislation and continue to work with the COPD Congressional Caucus and the US COPD Coalition

  2. Increased Research Funding

  3. Continue to monitor and make efforts to influence legislation to preclude the creation of specialty tiers in private insurers' prescription drug formulators ensuring that access to therapies are within reach for patients

  4. Ensure the safety of blood products in the United States

  5. Support legislative and regulatory policies that will promote the development of urgently needed new therapeutics

  6. Monitor and influence the implementation of the Affordable Care Act focusing on State Health Exchanges

  7. Continue to monitor and make efforts to influence the inclusion of Alpha-1 on the Compassionate Allowances List so that those with disability can quickly receive their Social Security benefits

  8. Continue to seek an Alpha-1 home infusion benefits as stand-alone legislation while preserving access to home infusion care under Medicare Part B and D.

  9. Access to Allied Health professionals by supporting the Medicare Part B Respiratory Therapy Initiative

  10. Continue to monitor Site of Service so that individuals with Alpha-1 are not forced to migrate to a site of service that is not preferable for them or their provider