Publications

Washington Days

By Michelle Putnam, Associate Director of Research & Advocacy

Congress is so strange. A man gets up to speak and says nothing. Nobody listens—and then everybody disagrees. – Boris Marshalov, a Russian observer, after visiting the House of Representatives.

How many times have we watched political clips on the nightly news and thought this very same thing? It's so easy to dismiss politics as merely a circus of showmanship, but Congress passes laws and budgets that affect our daily lives: funding for schools, transportation and health care. The only way to impact government is to participate in it, not only by voting, but also by visiting your Representatives and Senators. Several Hemophilia of Georgia volunteers had this opportunity during The National Hemophilia Foundation's Washington Days trip from February 25 – February 28. This trip is a long-running tradition that allows the bleeding disorder community an opportunity to amplify our advocacy at the federal level. It is during Washington Days that Congressional members from across the country hear about the issues most affecting our community, whether it be access to treatments, continued funding for our hemophilia treatment centers, or access to skilled nursing services.

Every year, Hemophilia of Georgia volunteers accompany staff members to Washington, DC for the sole purpose of learning about advocacy and visiting legislators. This year, volunteers Jared, Colin, Stormy  and Tyler  traveled with us to Washington, DC. Fortunately, we made it out of Atlanta before the snow and the ice hit, landing in Washington early Wednesday morning. Jared, Colin, and Tyler participated in a day-long Youth Advocacy Training program, where they spent time with other young people and learned best practices in grass-roots advocacy.

This year, the National Hemophilia Foundation had several issues on its agenda. First, we would advocate for continued funding for national hemophilia treatment centers through the Centers for Disease Control and Prevention and the Bureau of Maternal and Child Health. Second, we would address the issue of specialty tiers in drug formularies. When insurers assign specialty drugs, like arthritis drugs, to a specialty tier, families end up paying a percentage of the cost of the medication instead of a flat copay. Lastly, we would talk about access to skilled nursing facilities for people with hemophilia who sometimes have a hard time finding a facility to take them after a surgery, forcing them to stay in a hospital. All of these are complicated policy issues, but it is only when people share personal stories, like how they self-infuse or how much medication can cost, that our points hit home with legislators.

On Thursday, we were ready for our day on the Hill. HoG staff members Michelle Fitzwater, Jeff Cornett, Michelle Putnam, Robert Gillespie, and Mary Ann McCullough joined our volunteers. We braved falling snow and cold temperatures, but made it to the Capitol building looking dapper, if slightly damp. Georgia's Congressional delegation is quite large, so we split up into constituent groups so that we could make it to all of our appointments. We spent most of the time with Congressional staffers rather than the Senator or Representative, which is actually the best way to accomplish a policy goal. Staffers in Washington, DC, are quite knowledgeable and have usually worked on the Hill for a number of years. In essence, they are the ones who recommend policy to their bosses.

We met with staffers from the offices of both Senator Johnny Isakson and David Perdue. Senator Perdue is newly elected, and it was important that we get a chance to educate him on the importance of hemophilia treatment centers and access to medication. Stormy and Collin shared how Collin was diagnosed and the importance of receiving care from a treatment center.

The rest of our appointments were with Georgia House members. We met with staffers from the offices of Representative Hank Johnson, Representative David Scott, Representative Tom Price, and newly elected Representative Jody Hice. We also had the privilege of visiting Representative John Lewis' office, which is always a highlight for our students because of his historical ties to the Civil Rights Movement.

All of our meetings were not only cordial, but downright enjoyable. Yes, it's because our volunteers are always so poignant and polite, but also because of our history with our Congressional delegation. Hemophilia of Georgia has made advocacy a top priority over the years and trips like these show why it is so beneficial. After many years of traveling to the Capitol, introducing volunteers, and keeping in touch, members of Congress are familiar with bleeding disorders and the toll they take not only on a person's health and well-being, but also on the pocketbook. When it comes to making decisions about healthcare, they can stop and consider how it affects our community. These visits give us an opportunity to maintain relationships, which is an integral part of ensuring access to continued services.

After a day of walking back and forth between Congressional buildings, we gave our volunteers a break by walking back and forth between museums and monuments. We spent time in the National Air and Space Museum, the National History Museum, and the Museum of Natural History. We saw the National Cathedral, Georgetown, the National Mall and all of its monuments. We could have spent three more days in Washington, DC, but we figured there were people who may miss us back in Georgia!