Washington Days 2016
Nichelle Sims, J.D.
Associate Director, Research and Advocacy
If you’re not at the table, you’re on the menu.
—Unknown, Washington
Representation is not always enough. The opportunity to be present and express yourself at the seat of decision-making is invaluable and necessary for real progress to begin. Several Hemophilia of Georgia volunteers had the opportunity to “sit at the table” with members of Congress in February as part of the National Hemophilia Foundation’s Washington Days. This annual event provides an opportunity to speak directly with decision-makers and influencers on the policy issues affecting the bleeding disorder community.
Each year, HoG volunteers, along with a few HoG staff members, brave the harsh Washington winds and frigid temperatures to enhance their advocacy skills and meet with legislators in both houses of Congress. This year, volunteers Amy (HoG Board member), Anne, Molly, Bryce, Ashley (Junior Board member), Whitney (Junior Board member) and Stephen took their “seat at the table.” For some, it was their first visit to our nation’s capital.
The NHF had several important initiatives to address this year, including the launch of the Red Tie Challenge—an initiative to raise awareness of bleeding disorders and to commemorate the 30th anniversary of President Reagan’s one-time declaration of March 1986 as Hemophilia Awareness Month. In addition, the U.S. Department of Health and Human Services officially designated March as Bleeding Disorders Awareness Month.
To support the Red Tie Challenge, all HoG staff and volunteers proudly sported red ties in different ways throughout the trip. They asked legislators to do either a one-minute floor speech or enter a statement on the record in recognition of March as Bleeding Disorders Month and post a photo of themselves wearing a red tie on their social media accounts using #RedTieChallenge.
Legislators were also asked for their continued support to maintain funding for the federal hemophilia
programs at the Maternal and Child Health Bureau and CDC. Funding for these federal hemophilia programs ensures access to hemophilia treatment centers. Finally, each legislator was asked to either co-sponsor HR 3742, the Access to Marketplace Insurance Act, in the House or introduce companion legislation in the Senate. HR 3742 will require qualified health plans on the Affordable Care Act Marketplace to accept third-party premium payments from nonprofit organizations, which benefits people with bleeding disorders who rely on such assistance to pay for their health insurance premiums.
Legislative support on these issues is critical. Two HoG volunteers shared with legislators how their lives were impacted by bleeding disorders. Amy talked about caring for her young son with hemophilia, who needs to infuse every week, and Stephen discussed how receiving ongoing care from a treatment center is imperative to a good quality of life. By sharing personal stories to demonstrate how these issues affect everyday lives, we hope legislators will take notice and remember the stories when it comes time to cast their vote on healthcare legislation.
After a full and productive day on the Hill and braving 20 mph winds, the HoG team took to the streets to sightsee. They visited the National Mall and all of its monuments, the National Cathedral, toured Arlington Cemetery and took a trolley tour around the city to learn more about the nation’s history.
Our HoG advocates accomplished a lot, but there is still a lot more advocacy work to be done right here in Georgia. Until next year, Washington!