2022 Wrap-Up
by Johanna Gray and Ellen Riker, Advocacy Consultants

It has been another busy year in Washington (here’s hoping this won’t be true one of these years!), and we’re happy to provide a brief recap of Alliance advocacy activities from this year.

• Alliance Virtual Hill Day: Thank you to the 80 participants representing 29 HTCs and 22 states joined for our 2022 Virtual Hill Day with Members of Congress and their staff members. We provided general education about bleeding disorders and HTCs, discussed federal programs important to our community, including the 340B Drug Discount Program, and shared information about the “alternative funding model” program affecting HTCs and their patients.
• Implementation of the Hemophilia SNF Access Act: As you all know, the Hemophilia SNF Access Act finally took effect in October 2021, and we’ve spent much of this year helping members take advantage of the new policy. We held a webinar in October 2022 with NHF and the American Health Care Association (AHCA, the trade association for SNFs) to share important details on SNF staffing and practices and how the provision of services will occur. A recording of the webinar can be found here. The Alliance is planning a second webinar for HTCs to share their success stories on the placement of Medicare patients in SNFs and billing for treatments under Medicare Part B. Stay tuned for more information.
• Inflation Reduction Act: Congress was consumed this year with whether to pass a large reconciliation bill – it started as the Build Back Better package last year and eventually turned into the Inflation Reduction Act this summer. This large package had many provisions affecting lots of different policy arears but for health care, the banner news relates to new provisions that seek to lower drug costs, including for the first-time giving Medicare authority to negotiate some drug prices. As we have said for years, we have always thought that “drug pricing reform” could bring with it reform of the 340B program, and we are very pleased that our advocacy, and that of our covered entity colleagues, prevented that from occurring. We are always keeping our eye out and will
• Alternative Funding Model Advocacy: We have convened an Alliance/NHF/HFA work group to work on the Alternative Funding problem and have identified a few new advocacy strategies to address the issue. While we are continuing to develop potential legislation to prohibit the practice, we are also pursuing strategies to determine ways that alternative funding schemes could violate existing law. I’ll repeat my request for examples of plan language describing how hemophilia treatments are no longer covered. If you have any patients that have experienced this issue, and if they are willing to share information with us, please let us know. We will continue to update Alliance members as these strategies progress. Please contact us with any questions or concerns!
• PBM Reform: The Alliance did a few different advocacy efforts to spotlight the challenges that PBMs bring to our community, where they often cut HTCs out of networks and are involved in instituting policies that impede access to care for our patients. One that will continue into 2023 is that the Federal Trade Commission is investigating PBMs, and the Alliance submitted a detailed letter outlining all the way that these practices harm our community. Many Members of Congress have indicated interest in considering further oversight and reform of the PBM industry, and we will look for all opportunities to advocate for HTCs in this context.
• Advocacy Committee: Finally, we also created the first Alliance Advocacy Committee this year, which is chaired by Dean Hindenlang and involves several Alliance members from across the country. The point of the Committee is for more members to have input on Alliance advocacy activities, helping us identify problems facing HTCs and to help to develop solutions. We plan to hold Town Halls in early 2023 so that more Alliance members can get involved in our work – stay tuned for more info on those!

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 the start of the new Congress and all that 2023 will bring and thank you in advance for your continued advocacy on behalf of the community!