Alpha-1 patient advocates, Foundation staff, and industry representatives ascended to Capitol Hill to partake in the 2022 Alpha-1 Advocacy Workshop from September 12-13, 2022. This marks the first in-person Alpha-1 advocacy event in several years. An Alpha-1 Hill Day was originally planned to take place in March 2020 and was indefinitely postponed due to the public health emergency caused by the outbreak of the COVID-19 pandemic.
In the years since then, the Alpha-1 Foundation has organized and facilitated several Virtual Alpha-1 Lobby Days that allowed the Alpha-1 community to rally around the issues important to the Alpha-1 community and meet with members of congress on Zoom to tell their stories. During that time, the Alpha-1 Foundation drafted legislative language that came to be known as the John W. Walsh Alpha-1 Home Infusion Act (officially HR 7346), which was formally introduced in the House of Representatives in April 2022 by Representative Maria Elvira Salazar of Florida’s 27th congressional district. The legislation seeks to create a permanent benefit under Medicare Part B for home infusions of augmentation therapy to be reimbursed, as this is the standard of care under commercial insurance. This change will cut costs and mitigate the risks Alpha-1 patients face when entering infusion centers.
Alpha-1 patient advocates came together for the workshop and over the course of the two-day workshop, the patient advocates heard presentations from Alpha-1 Foundation President & CEO Scott Santarella, industry representatives from Grifols, CSL Behring, and Takeda, as well as the Foundation’s advocacy advisors, Miriam O’Day and James Romano and headed then sent off to Capitol Hill for a day full of congressional appointments with members of the House of Representatives and the Senate.
Advocates were grouped into teams based on their state and region, with each advocate attending several meetings. The goal of the day was to raise awareness of Alpha-1 and gain support for the John W. Walsh Alpha-1 Home Infusion Bill through co-sponsors for the House bill, or the introduction of a senate companion bill to accompany the house bill.
By the end of the day, Alpha-1 advocates had attended over 30 meetings, obtained two co-sponsors for HR 7346, and garnered interest from several members of Congress. Congressman Bill Posey, from Florida’s 8th congressional district, signed onto the bill shortly after meeting with his constituent Lisa Kosak. Congressman Mike Thompson, of California’s 5th district, also co-signed following his appointment with constituent Joseph Masnack. The event wrapped up with an evening dinner and recap to discuss the highlights of the day and next steps.
The Foundation will continue to coordinate Alpha-1 advocacy efforts in an effort to raise awareness for Alpha-1, support policies that maintain and improve the quality of life for Alpha-1 patients, and give Alphas the opportunity to meet with their elected officials to tell their stories.
To get involved and take action, contact Jeanne Kushner, Director of Communications & Public Affairs, jkushner@alpha1.org
