Search form

Washington Days


Printer Friendly and PDF

Washington Days

Washington Days
United States

Nothing About Us Without Us, Coming Together as One Voice

The National Hemophilia Foundation (NHF) is excited to report that we had a record number of participants in this year’s Washington Days, February 25-27, 2015. More than 300 attendees from 45 states and Puerto Rico gathered for our community advocacy event. They represented 150 Congressional districts and participated in 240 Hill visits, 100 of which were meetings scheduled with senators and representatives. 

This year we asked Congress to:

  1. Support maintaining funding for the federal hemophilia programs at the Maternal and Child Health Bureau (MCHB) and Centers for Disease Control and Prevention (CDC) in their appropriations requests;
  2. Co-sponsor Representative Aaron Schock’s (IL-18) legislation to improve access to skilled nursing facilities (SNFs) for hemophilia patients in the House or introduce companion legislation in the Senate; and
  3. Co-sponsor the Patients’ Access to Treatment Act (House) or introduce companion legislation (Senate) to increase access to life-saving drugs on specialty tiers by prohibiting insurers from imposing exorbitant co-insurance requirements on patients.

Following the full day of Hill visits, participants relaxed and enjoyed the State Advocacy Recognition dinner Thursday night. There, chapter leaders and key advocates were recognized and celebrated for their successful state advocacy initiatives undertaken throughout the year, courtesy of Novo Nordisk. 

Washington Days concluded with a State Advocacy Workshop on Friday. Advocates participated in an in-depth discussion of three emerging trends and corresponding legislative efforts related to each that have the potential to affect the bleeding disorders community: out-of-pocket costs, preferred drug lists and standardization of prior authorization.  During the first part of the workshop, advocates heard from NHF’s public policy team about the real impact these issues are having on the community, as well as how to frame these issues.  During the second half, participants broke into groups to develop talking points on these issues based on the discussion.

NHF wants to take this opportunity to thank all those who participated, and gave their time and energy to advocating on behalf of the entire bleeding disorders community--we couldn’t have done it without you!  We will keep you informed as the legislation we support is introduced.  Please remember: if a legislator or his/her staff person contacts you, or if you have any questions, please feel free to contact a member of NHF’s public policy team.

We also would like to thank the following organizations for their generous support, which contributed to the program’s overall success:

  • Hemophilia Association of the Capital Area and Pfizer: Welcome Dinner & Reception
  • Novo Nordisk: Regional Advocacy Center luncheon and the State Advocacy Recognition Dinner CSL Behring: Raise Your Voice – Youth Advocacy Summit
  • Washington Days Training & State Advocacy Workshop
BaxterCSL BehringGrifols
Biogen Idec HemophiliaHemophilia  AllianceNovo Nordisk

A special thank-you goes out to our incredible federal consultants, Ellen Riker and Johanna Gray, for their work on behalf of the community!