Advocacy

Briefing PhotoThe Alpha-1 Association's advocacy and public policy program is an integral part of its mission. The program monitors and influences legislative and regulatory issues that affect individuals and families living with Alpha-1 and makes public the Association's positions on such issues as access to care, blood product safety and availability, funding for medical and scientific research and the continued development of new therapeutics. Our growing and dynamic Grassroots Advocacy Network ensures that the patient voice is heard in the process.

 

Close collaboration with the Alpha-1 Foundation and strategically-aligned consumer organizations, coalitions, and other associations as well as industry and government ensure that the interest of our constituency is considered in important decisions. Our government relations consultant, Miriam O'Day, represents the Association and Foundation on Capitol Hill, ensuring a coordinated effort on behalf of the Alpha-1 Community. A Joint Public Policy Working Group (PPWG) sets priorities and assists in determining strategic responses to key issues on behalf of the Association and Foundation.

 

The Association has closely monitored the implementation of health care reform and any other issues that may impact access to or quality of care for individuals diagnosed by Alpha-1. Ms. O'Day has spoken at essential legislative and regulatory gatherings and monitored and provided feedback regarding changes to the Affordable Care Act. The Association has served as a point of contact to collect information and respond to access to care threats. By monitoring Health Care and insurance reform implementation with a focus on preferred drugs, managed care, and affordability, we have been vigilant to ensure that Alpha-1 patients continue to have access to care.

 

Please take some time to navigate the advocacy portion of this website for the latest national and state advocacy news and information.


Aimee Bulthuis, with the COPD Foundation is in charged with maintaining both the Alpha-1 and COPD Grassroots Advocacy Network. Please reach out to Aimee if you would like to become involved in grassroots advocacy by contacting her at abulthuis@COPDFoundation.org.