Ian Muir

Washington Days 2011

The power of personal stories
Author: Sarah Aldridge

Although few people relish public speaking, hitting a lifetime benefits cap or being denied access to insurance because of a pre-existing condition can suddenly catapult a person into the advocacy arena. This year, approximately 225 people received advocacy training and visited their elected officials during the National Hemophilia Foundation’s (NHF’s) annual Washington Days, February 16–18, at the Crystal Gateway Marriott in Arlington, Virginia.

The power of a personal story was underscored by members of Congress themselves. “You are effective just by telling how hemophilia affects your health, your family,” said Rep. Jason Altmire (D-PA). He received NHF’s L. Michael Kuhn Award for his co-sponsorship of H.R. 6528, the Health Insurance Coverage Protection Act, and for his continued support of hemophilia treatment center (HTC) funding. “Don’t be afraid to get in front of your member and tell your story,” Altmire said. “You all have great stories to tell. You are making a big difference by being here.”

That send-off set the tone for the day, as individuals and families from Maine to Washington state met with their senators and representatives to hammer home two main issues for the bleeding disorders community this year. They urged legislators to maintain, not cut, funding for HTCs and not to repeal the healthcare reform bill. The bill eliminated annual and lifetime limits on insurance policies, as well as exclusions for pre-existing conditions.

NHF’s two “asks” were well received among some seasoned and freshman legislators alike. Paul Ryan (R-WI), a fiscal conservative and chair of the House Budget Committee, listened to his constituents with bleeding disorders. “Where we’re making cuts is in those agencies with massive increases,” he said. Ryan was impressed that federal funding for HTCs had not changed in a decade. “Flat funding flies under the radar screen,” he assured the group.

As Washington Days attendees headed back to the hotel after a full day on the Hill, their advocacy efforts were not over. A state training session on Friday by NHF’s advocacy team reminded members of the bleeding disorders community to take their stories to their state capitols around the country. Personal stories are persuasive and powerful.