By Johanna Gray and Ellen Riker
We had an active year in Washington, working to advocate on behalf of HTCs and the broader bleeding disorders community, and doing our best to translate everything happening here for the community. As we look back, here are a few highlights:
- Introduction and Passage of the Hemophilia SNF Access Act: After years of research and analysis, attempted regulatory approaches, and gentle and firm advocacy from HTC social workers, nurses and physicians urging us to continue to search for a solution to this problem, we were so pleased that the Hemophilia SNF Access Act was introduced in both the House and Senate with bipartisan original cosponsors this year! And as Joe noted above, we’re thrilled that the bill was included in the omnibus federal spending bill released on December 21, 2020. That we were able to go from introduction to enactment in just one year is a testament to the effective advocacy done by so many community members.
- Alliance Virtual Hill Day: Our 2020 Hill Day was unprecedented in two ways: first, it was our first-ever virtual Hill Day, where we scheduled virtual meetings with Members of Congress and their staffs over zoom vs. our regular in-person meetings. Second, it was the first where Alliance members advocated for legislation (the SNF bill mentioned above) rather than just educating policy makers about HTCs and 340B more generally. We were thrilled with how everything turned out and that we had so many members who were willing to lobby for the SNF bill as well as who were especially flexible as we all adjusted to the virtual format. We expect to hold another Virtual Hill Day in 2021 and hope that you will consider joining us! In a way, it is easier than coming to DC, since you only have to set aside a few hours for trainings and meetings, rather than a few days.
- COVID-19 Public Health Emergency: As soon as the COVID-19 public health emergency (PHE) began in March, policymakers in Congress and throughout the federal government worked to respond. The DC team provided updates about policy changes affecting HTCs on multiple Alliance webinars, including the COVID legislative and regulatory packages, and the expansion of telehealth services in Medicare and Medicaid, allowing for services be offered to patients in their homes. We also advocated with HRSA to allow for HTCs to have flexibility in adding contract pharmacy partners if necessary due to the pandemic and sent comment letters to CMS on relevant policies.
- Regulatory Policy: Besides the COVID-19 related policy changes, we also worked to understand and influence other regulations. For example, President Trump released many executive orders (EOs) and proposed and final rules related to drug pricing. We analyzed all of these, identified where they might impact HTCs and drafted comment letters when necessary. We anticipate that President-elect Biden will release his own EOs and regulations after he takes office in January, and we will continue to advise the Alliance on these agency and regulatory activities. Look for updates in the Newsletter next year!
- 340B Program: As Issie noted above, after a quiet start to 2020 in terms of policies affecting the 340B Program itself, things heated up over the summer and fall. We have been working to respond to Congressional interest in the 340B Program and have been strategizing with other covered entities about how to advocate to protect the program in 2021.
We want to close by wishing everyone a restful holiday break and a happy and healthy new year! A new Congress and new Administration taking office in January will undoubtedly create new challenges and opportunities for the bleeding disorders community. We will do our best to help Alliance members navigate and thank you in advance for your continued advocacy on behalf of the community!
Also in this Issue…
Notes from Joe
· Looking Back, Planning Ahead
· Update and Year in Review
· Year in Review
· Operations Update
· 2021 Meeting Schedule