On February 26-28, bleeding disorders advocates from around the country will convene in Washington, DC, for the National Hemophilia Foundation’s (NHF) Washington Days advocacy event. The annual gathering is an opportunity for nearly 500 people of all ages who are affected by bleeding disorders to convey to elected officials and Congressional staffers the ways federal legislation and funding impact their lives.
This red tie-clad army of advocates has in recent years pushed to protect key provisions of the Affordable Care Act and made the case for continued funding of federal programs that support bleeding disorders treatment and research. In addition to health insurance, access to appropriate healthcare is a perennial concern. This year advocates will press legislators to support a new bill ensuring people with bleeding disorders on Medicare have access to skilled nursing facilities (SNFs). People with bleeding disorders who receive Medicare are routinely rejected for care by SNFs because of current billing rules; the proposed Hemophilia SNF Access Act amends these rules.
Washington Days is a whirlwind of energy and excitement. Thankfully, effective advocacy doesn’t rely on memorizing lots of facts and figures about healthcare policy. What hits home with legislators are community members’ personal stories—sharing the day-to-day issues of living with a bleeding disorder and connecting how the decisions made in Washington directly affect people’s lives. In addition to educating Congressional representatives and getting an inside look at the legislative process, Washington Days participants hone their grassroots advocacy skills to take back home with them.
Of course, not everyone can travel to the nation’s capital to take part in Washington Days. But there are many other ways to play an important part in bleeding disorders advocacy at the national, state and local levels. Here are just a few things you can do:
Get informed
Contact your NHF chapter to find out how to stay up to date on critical issues in your state and community. Sign up for national advocacy emails at the NHF website (be sure to check the box for the advocacy email list). Also, follow your chapter and NHF on social media, such as Facebook, Instagram and Twitter.
Participate in state advocacy days
Many healthcare policy decisions are made at the state level. Most chapters now host a day at their state capitol where advocates meet with legislators to educate them about life with a bleeding disorder, forge strategic relationships and advocate for or against pending legislation. And because state legislators generally have more time to meet with and get to know their constituents, these statehouse visits can be very rewarding.
Attend an advocacy skills training workshop
Several chapters offer training to introduce newer advocates to the ins and outs of the legislative process and how to effectively communicate with lawmakers. Often these trainings are in conjunction with a state advocacy day, so check with your chapter when the next event will take place.
Start planning for Washington Days 2021
If you’re interested in attending Washington Days next year, check with your chapter about applying for full or partial funding to attend. Most chapters offer limited scholarships for people who are motivated to come but who need support to make the trip.