Year in Review
by Johanna Gray, Advocacy Consultant

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:

• Implementation of the Hemophilia SNF Access Act: We spent a lot of time this year working with our payer and legal team colleagues, as well as our colleagues at NHF, to prepare for the October 1, 2021 implementation date of the Hemophilia SNF Access Act. We have worked together to create a factsheet for members on reimbursement issues associated with the policy change and have been working with the SNF trade association on educational materials for SNFs. We know that many members continue to have questions about how the new policy is being implemented and how to ensure that your patients have access to SNFs if appropriate. Please be in touch with us with any questions and know that we’re continuing to develop materials and will share them as they’re ready!
• Alliance Virtual Hill Day: We had another wonderful virtual Hill Day in 2021 and are so appreciative of our members who set aside time to participate. We both talked about hemophilia and HTC 101, as well as the alternative funding model that is an emerging issue affecting both HTCs and your patients. We’re starting to plan another Virtual Hill Day in 2022 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.
• HTC Sustainability: As you know, supporting HTCs in having sustainable programs with adequate funding is at the core of the Alliance’s mission and all of our activities. We are beginning to more formally tackle this on a policy level as well – we have catalogued various threats and opportunities for HTCs and are developing strategies to address them with Congress, the Administration and other stakeholders. Much more to come but please let us know if you have any concerns or policy ideas that you’d like to share with us.
• Changing Washington Environment: Finally, this year has also brought many changes to the broader policy environment including the transition from the Trump Administration to the Biden Administration. Congress has also considered a number of large bills related to COVID-relief, infrastructure and the still-under-debate Build Back Better package focused on “human infrastructure.” We have closely monitored everything happening in DC and have advocated to protect HTCs and people with bleeding disorders throughout.

We want to close by wishing everyone a restful holiday break and a happy and healthy new year! We will do our best to help Alliance members navigate and thank you in advance for your continued advocacy on behalf of the community!