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 2009 Public Policy Agenda


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 2011-2012 Public Policy agenda has been adopted by the Alpha-1 Association and Alpha-1 Foundation Board of Directors as priority issues for 2011: 

  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 formularies 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. Continue to monitor Least Costly Alternatives (LCA) to ensure that CMS does not receive the legislative authority implement LCA.
  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 examine and promote State Health Exchanges to make certain that patients have additional paths in accessing affordable health care.
  9. Actively assist the patient and provider community in understanding the Diagnosis and Labeling system so that those receiving augmentation therapy do not have to re-qualify for treatment.
  10. 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.
  11. Access to Allied Health professionals by supporting the Medicare Part B Respiratory Therapy Initiative (HR 941).
  12. Seek to support and encourage Medigap policies for the disabled at a State level.
  13. 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.
  14. Determine appropriate disability partners and join with them to increase TSA sensitivity to Specific Medical Conditions - reducing disproportionate inconvenience and risk to health for those with Medical Conditions such as Alpha-1 and COPD who travel by air.