Washington Update, May 2021


Washington Update

Hill Day Recap
by Johanna Gray

The Hemophilia Alliance held another successful virtual Hill Day in early May. We had 17 teams of advocates – including HTC staff members, patient advocates, representatives from NHF and HFA, and Alliance contractors and staff – participate in nearly 130 meetings with Congressional offices. We discussed a handful of issues:

  • Overview of bleeding disorders and HTCs: With so many new Members and staff, we spent time on bleeding disorders and HTCs 101.
  • Overview of 340B program and its importance to HTCs: We walked through the importance of 340B program income to allowing HTCs to serve all of their patients and the ways that HTC participation in the program might differ from other covered entities.
  • Discussion of new access to care issue – alternative funding model: This is the newest access to care challenge, where ERISA plans are dropping coverage of specialty drugs and then referring patients to manufacturer patient assistance programs to get access to their drugs.
  • We did not have a concrete “ask” for these issues this year; we decided that going back to educating Members of Congress and their staffs was worthwhile since there are so many new faces this Congress, plus it allows for more Alliance members to participate. For the alternative funding model issue, we did ask for offices to let us know if they want to work with us on the issue.

    We received great feedback from the offices with whom we met. There was broad interest in learning more about our community, support for HTC participation in 340B, and concern about the alternative funding model. We believe that the advocates also all had a great time – with meeting on Zoom this year (a platform very familiar to staff and Members of Congress, as well as all of us!), many more Hill folks participated on video, which made for better meetings.

    In follow up to the Hill Day, we are now planning to reach out to the handful of offices that indicated an interest in working on the alternative funding model, as well as the staff for the House and Senate Committees with jurisdiction over the issue (House Education and Labor, and Senate Health, Education, Labor and Pensions). We are hoping to work with these staffers to develop the policy solution to the issue that could be advanced this Congress. This Hill strategy complements other efforts that the Alliance is undertaking with our partners, including outreach to payers, state insurance commissioners, manufacturers, etc.

    Thank you so much to all of the Alliance members who made time to participate in the Hill Day! We look forward to hopefully seeing everyone in person for the Alliance Hill Day in 2022!


    Also in this Issue…

    Notes from Joe
    · Update on the Alliance’s Work on an Intranasal DDAVP

    Legal Update
    · 340B Program Updates

    Payer Update
    · Revenue Cycle & A/R Management Assistance

    Notes from the Community
    · Announcing: Hemophilia Alliance Foundation 2nd Annual “Large” Grant!
    · HFA To Host Mental Health First Aid Training Opportunity