On March 9, more than 500 people with bleeding disorders and their families put on their red ties and prepared to go to one of more than 300 meetings with members of Congress and their staff at the National Hemophilia Foundation’s (NHF) Washington Days. This yearly event, which brings people from nearly every state in the US to the capital, is an important part of NHF’s commitment to working to ensure that people with bleeding disorders have access to affordable, quality health insurance.
The power of a successful advocacy day relies on individual storytelling focused on a central theme. The two main points the volunteer advocates were asking their legislators to support were to continue federal standards for public and private insurance so that patient protections included in the Affordable Care Act (ACA) and access to insurance are maintained, and to support federal hemophilia programs at the Centers for Disease Control and Prevention and Health Resources and Services Administration. But it’s the individualized story that makes the difference, says Michelle Rice, senior vice president for external affairs at NHF. “Advocates telling their senator or representative how a specific piece of legislation affects them personally can make a difference,” she says.
Advocates are given plenty of information to prepare them for the meetings. NHF holds two Washington Days webinars weeks before the event to let participants know what to expect and to give a preview of the issues they will be discussing. When volunteer advocates arrive in Washington, DC, they are given two trainings the night before the Hill visits: one on how to effectively use social media for advocacy and another covering in-depth explanations of the issues, talking points and how to use personal experiences to connect to the larger issues. “Many of our advocates remember what it was like before the essential health benefits were guaranteed by the ACA,” Rice says. “It’s not hard for them to make a compelling case for the importance of those protections.” Volunteer advocates were also given leave-behinds and custom business cards so interested lawmakers and staffers could follow up with any questions.
An additional benefit of Washington Days is sparking a passion for advocacy at the local level, says Nathan Schaefer, senior policy director at NHF. “A lot of volunteer advocates come to Washington Days, feel empowered by their experience and then go home wanting to get involved with their chapters’ advocacy program,” he says. Many areas of access to health insurance, including prescription drug formulary pricing and access to Medicaid, are decided at the state level. The state advocacy training session at Washington Days educated participants on building grass-roots advocacy initiatives and potential future changes to Medicaid.
NHF wishes to thank the sponsors of the Washington Days and state advocacy training sessions: Alnylam, Bayer, BioMarin, Bioverativ, CSL Behring, Genentech, Grifols, the Hemophilia Alliance, Octapharma, Pfizer, Novo Nordisk and Shire.
With more than 500 attendees, the 2018 Washington Days was the largest in NHF’s history. Rice believes the ACA repeal-and-replace efforts of 2017 galvanized the community into renewed activism. For Rice, this is a welcome sign. “An engaged, active community can accomplish great things.”
Learn more about Washington Days at the NHF website.