Alphas in Action Advocacy Week

On Monday, April 4, 2022, the Alpha-1 community came together on a Zoom reception call to kick-off the Spring 2022 Advocacy campaign. Titled “Alphas in Action” this week-long campaign was aimed to gain additional co-sponsors for HR 7346: John W. Walsh Alpha-1 Home Infusion Act that was introduced on Friday, April 1, 2022. This legislation, when passed, will change the Medicare law to improve access to augmentation therapy infusions at home for individuals with Alpha-1 Antitrypsin Deficiency (Alpha-1) under Medicare Part B. The act is named after the Alpha-1 Foundation’s late co-founder and President John W. Walsh and honors the contributions that he and his family made to the Alpha-1 community.

The bill was introduced by the original co-sponsors: Congresswoman Maria Elvira Salazar (R-FL) and Congresswoman Chellie Pingree (D-ME). Salazar’s interest stems from the fact that the Foundation’s offices are in Coral Gables, Florida which is in her district, and Pingree joined the bill on behalf of one of her constituents living with Alpha-1. The bill number became available in the Congressional Record as H.R. 7346. Now that the bill has been introduced (colloquially referred to as “dropped”) and assigned a number (H.R.7346), it will begin making its way through the legislative process.

The week kicked off with a reception joined by Alphas, friends, family, caregivers, Board of Directors, Foundation staff and industry partners. Miriam O’ Day, Senior Public Policy Advisor, and James Romano, Legislative Advisor to the Foundation, provided an overview for all attendees. The goal to reach 100 co-sponsors on the bill before the adjournments of the session of the 117th Congress was announced. Appointments took place virtually throughout the week with congressional offices, and advocates were able to share their Alpha stories. We are proud to announce that Congressman Brian Higgins (NY-26) signed on as a co-sponsor. This was through the hard work of late Alpha advocate Rich Lee, who spearheaded this initiative with this office for the past year.

“It is through the dedication and commitment of each of you here today that this bill has become a reality. Three virtual lobby days and the countless meetings that each of you have attended on behalf of all patients is why we are able to celebrate this moment today, “said Scott Santarella, President and CEO of the Alpha-1 Foundation.

What happens next?

We are grateful for the dedication of our committed Alpha advocates and will continue gaining additional signatures for this bill through the 2022 calendar year.

“To Alphas, having this access to care will improve lives and hopefully lessen the costs associated with the therapy. I know Johnny [John] is up there with our father, Jack, toasting the hard work associated with this accomplishment, proud of those that took up the torch and got the job done. Where there is a strong and committed will, there is a way! As John always said, “KEEP THE FAITH”, exclaimed Fred Walsh, Alpha and Foundation Board of Director.