“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has,” anthropologist Margaret Mead once said. The National Hemophilia Foundation’s Washington Days, which will be held February 16–18, 2011, provides the forum for members of the bleeding disorders community to change their part of the world as they meet with their congressional representatives to advocate for crucial issues.
Previous Washington Days efforts concentrated on key issues in the Patient Protection and Affordable Care Act, also known as healthcare reform, which contained many provisions that affect the health of people with bleeding disorders. Strong advocacy from the bleeding disorders community helped eliminate lifetime caps and end the policy of excluding children from health insurance because of pre-existing conditions.
This year, Washington Days attendees will urge their congressional representatives to maintain funding for the federally subsidized hemophilia programs at the Centers for Disease Control and Prevention and the Maternal and Child Health Bureau. They will also ask Congress to support implementation of important aspects of healthcare reform.
Julie Baker of Las Vegas remembers her 2010 Washington Days meeting with Senate Majority Leader Harry Reid. Baker explained how her son, Austin, who has severe hemophilia A and an inhibitor, has $500,000 monthly medical bills. “I said that if you don’t get rid of the lifetime cap, I’m going to have to emancipate him, and he’s 16 years old,” Baker recalls. “Later that month, one of his staffers called me back to get information on my son and our situation. It’s gratifying when you reach out to your representatives and know that they heard you.”