The Alpha-1 Foundation held its first ever Virtual Alpha-1 Lobby Day on Tuesday, November 17, 2020 in order to bring awareness to three prominent issues that affect the broader Alpha-1 community. The Virtual Lobby Day was held in conjunction with Alpha-1 Awareness Month, which is recognized annually during November. Members of the Alpha-1 community were given the opportunity to meet with the offices of their local elected officials to tell their Alpha-1 stories and provide a face to the issues and proposals being presented.
The Alpha-1 Foundation had originally scheduled a Hill Day in March 2020, where Alpha-1 advocates would travel to Washington DC to attend appointments with senators and representatives from their state. Two weeks prior to the date of the Hill Day, the Foundation ceased all travel due to the COVID-19 pandemic and the various stay-at-home orders that ensued. As with all it’s other programs, the Foundation pivoted the Alpha-1 Advocacy program to a virtual format following the success of the Virtual Alpha-1 National Conference and the remaining Alpha-1 Education Days in the fall.
The transition to virtual meant instead of a traditional meeting in a Washington DC office, advocates and legislators met over Zoom video conference calls. While this was a new way of doing advocacy, it allowed several first time Alpha-1 advocates to participate in the process. For many, it was their first-time meeting with an elected official to tell their story and show how policy can play a significant role in how they cope with their conditions.
“I have learned so very much from my inclusion, lessons that are already informing my thoughts and efforts regarding Alpha-1 advocacy,” said Richard Lovrich, who attended two appointments. “The biggest takeaway? Every beneficial aspect of healthcare from the consumer point of experience was fought for, and when it comes to healthcare legislation, nothing “just happens. I am proud of Miriam and our foundation and proud of each and every Alpha fighting on the front lines for patient’s rights.”
The Foundation outlined three priorities to present in each meeting that were timely and could benefit the Alpha-1 community during this period of COVID-19. The first priority highlighted the need for home infusions of augmentation therapy, currently the only therapy for Alpha-1 patients, to become a permanent benefit for Medicare beneficiaries. The Alpha-1 Foundation has drafted legislative language to support this initiative, which was shared with each office in the aftermath of the appointment.
The second priority endeavored to make telehealth services a permanent benefit for Medicare beneficiaries. A special provision by the Centers of Medicare and Medicaid services issued during the beginning of the public health emergency (PHE) allowed reimbursement of telehealth services to become more flexible. This has benefited Alphas who rely on regular visits to their doctors by mitigating the risk of entering a medical facility and potentially being exposed to COVID-19. The Foundation identified H.R 7663, as known as the “Protecting Access to POST-COVID-19 Telehealth Act of 2020”. This legislation seeks to take critical steps toward ensuring all Medicare beneficiaries have continued access to telehealth services after the COVID-19 PHE period.
Finally, the third priority was an ask to congress members to support increased funding for the National Institutes of Health (NIH). During the period of COVID-19, there have been shutdowns and delays in medical research. The Foundation has its own research programs and agenda, which intends to provide investigators with funding so they can go on to receive funding from the NIH for their research. Without NIH funding, the research conducted for rare disease like Alpha-1 Antitrypsin Deficiency could be in jeopardy. With the NIH receiving increases in funding each year for the last five years, feedback to this request has been universally positive.
The Virtual Alpha-1 Lobby Day concluded with an evening reception where all the advocates came together to share their experiences throughout the day and share advice and provide feedback for future lobby days. Moving into 2021, the Foundation plans on regularly convening Lobby Days to keep the Alpha-1 advocacy agenda as a priority as well as build on the relationships built with legislators.
