The National Hemophilia Foundation (NHF) has been advocating for the bleeding disorders community and holding advocacy days in Washington, DC, for many years. While there are always new policy issues and advocates, a single person can make all the difference. As a result of many individual advocates, our successes include funding for hemophilia treatment centers (HTCs) in the 1970s and 1980s, the passage and funding of the Ricky Ray Hemophilia Relief Fund Act in the 1990s and the introduction of a bill to ban lifetime insurance caps in the 2000s. This lifting of lifetime caps was ultimately included in the Affordable Care Act. Most recently, members of Congress recognized Bleeding Disorders Awareness Month and participated in the Red Tie Challenge in 2016.
Many first-timers at Washington Days fear that they will have to memorize lots of facts and figures or that they might be stumped by questions from congressional members and staff. In reality, NHF provides participants with information and training. But the most effective advocacy has always been individuals telling their own stories. In all the years we’ve been helping coordinate and conduct these visits, we’ve never had a first-time advocate say that he or she didn’t want to participate again because of a bad experience.
With that in mind, we need you! Your story relates to every policy issue affecting the community. Is your HTC important to you? If so, Congress must maintain funding for programs that support them. Do you face insurance barriers? Then we need policies so that all insurance plans adequately cover bleeding disorders treatments and services.
Finally, thank you to the hundreds of people who participate in Washington Days and other advocacy activities each year. We hope to see even more of you in 2017!
Johanna Gray and Ellen Riker are NHF’s federal policy advisors in Washington, DC.