The Alpha-1 Foundation convened the third Virtual Alpha-1 Lobby Day on Wednesday, November 10, 2021 during the annual Alpha-1 Awareness Month. This officially marked one year since the first-ever virtual lobby day for the community. Once again, Alpha-1 advocates came together to meet virtually with their state representatives to tell their stories and provide a face for Alpha-1. In total, over 50 appointments were scheduled and attended by patients, family, and staff members from the representatives’ offices. This tradition of consistently providing a presence on Capitol Hill has allowed the Alpha-1 community to develop relationships with many congressional offices and keep the dialogue around our highest priorities in motion.
The Virtual Lobby Day kicked off Wednesday morning with a reception for Alpha-1 advocates to come together to overview the structure of the day and outline the priorities set forth by the Foundation’s advocacy and public program. Scott Santarella, President & CEO of the Alpha-1 Foundation, provided welcoming remarks and thanked our program sponsors, AlphaNet, CSL Behring, Grifols, and Takeda for their continued dedication to supporting the Alpha-1 Foundation’s advocacy efforts.
Miriam O’Day and James Romano, MBA, MPA, advocacy consultants for the Alpha-1 Foundation, set the stage for the daylong agenda. The primary focus for the 2021 Fall lobby day stressed the importance of the home infusion legislation drafted by the Alpha-1 Foundation. The John W. Walsh Alpha-1 Home Infusion Act, legislation named for the Foundation’s late Founder and President, seeks to make home infusions a permanent benefit under Medicare Part B. The first goal of the lobby day was to obtain co-sponsors for a House version of the bill, which is currently sponsored by Representative Maria Elvira Salazar (R-FL), and a lead sponsor for a senate version of the bill. Additionally, advocates asked representatives for their sponsorship on a letter to the Centers for Medicare and Medicaid Services (CMS) director. This draft letter would work to place CMS on record as to the roadblocks in implementing the temporary home infusion benefit in the Alpha-1 Community.
During the onset of the COVID-19 pandemic in early 2020, the Alpha-1 Foundation alerted the CMS about the need for augmentation infusions to be administered in a safe site of care and offer protection from exposure to this deadly virus. CMS agreed that there would be detrimental health effects on Alpha-1 patients of skipping infusions because of the risk of possible exposure to COVID-19 when going to a hospital infusion suite or a physicians’ office. CMS responded rapidly with the flexibility within the billing and payment system for Alphas to receive home infusions under Medicare Part B or Medicare Part D. Because of the lack of CMS guidance on reimbursement for the treatment, items and services; the temporary benefit was not accessible for patients. The primary reason given by home health providers was that this was a temporary benefit that did not have rules and regulations established to assist with contracts and reimbursement of Alpha-1 Antitrypsin augmentation therapy.
The Virtual Alpha-1 Lobby Day concluded with an evening reception where all the advocates came together to share their experiences from the day, share advice and provide feedback for future lobby days.
Moving into 2022, the Foundation plans on organizing a hybrid Lobby Day to keep the legislation moving and continue to build on the relationships built with legislators for all of the advocacy priorities.