On February 17, 2011 24 NEHA members, including kids and entire families, spent the day on Capitol Hill in Washington, DC meeting with their federal lawmakers as part of the National Hemophilia Foundation’s (NHF) Washington Days. Individuals with bleeding disorders and their families met with the senators and representatives from their respective states to advocate for issues important to them and the bleeding disorders community.
Participants focused on two main issues when speaking with their US lawmakers: (1) the maintenance of the Affordable Care Act provisions that allow individuals with high-cost conditions, such as hemophilia, access to adequate and affordable coverage; and (2) maintenance of funding for the hemophilia programs at the Centers for Disease Control (CDC) and Health Resources and Services Administration (HRSA). NEHA members reported that these received very positive response to these requests from lawmakers and their aides.
Some of the representatives and senators with whom the NEHA participants met included Senator Olympia Snow of Maine, Senator Joseph Lieberman of Connecticut, and Representative Barney Frank of Massachusetts. Some NEHA members ran into other notable lawmakers include Senator John McCain whom they met on an elevator ride.
In addition to meeting with US lawmakers, NEHA participants took part in advocacy training for both the federal and state levels on the day prior to and the day after their day on Capitol Hill. For those who had attended Washington Days in the past, it was an excellent opportunity to catch-up with friends from non-New England states who they knew from past events.
This year NEHA offered substantial travel subsidies to Washington Days attendees that included paying for hotel stays and a travel stipend for air, car, or rail travel. NEHA hopes to continue to offer these subsidies next year.
Planning is already under way for NHF’s 2012 Washington Days to be held on March 7-9, 2012. All members of the bleeding disorders community are welcome to attend Washington Days. NEHA will distribute an invitation to participate in early January.
If you are interested in attending NHF’s 2012 Washington Days, please contact Kevin Sorge at NEHA at 781-326-7645.
