Hemophilia Day at the Capitol
By Michelle Putnam, Associate Director of Research and Advocacy
Each year, starting in January, the Georgia General Assembly meets for its yearly legislative session. During these 40 days, our representatives and senators will pass new laws, including an annual budget. Unlike Congress in Washington, DC, state legislators have a very limited amount of time to get things done. Each legislative session, they see hundreds of bills cross their desks, which means they rely on constituents and experts to help them sort through what should become law and what should not.
When it comes to bleeding disorders, you are both the constituent and the expert. Recognizing this, Hemophilia of Georgia has hosted an annual lobby day each legislative session. Each year a resolution is passed on either the floor of the House or Senate, declaring it Hemophilia Day at the Capitol, and members of the bleeding disorder community visit personally with their legislators. Many people in the General Assembly are not familiar with bleeding disorders, and have no idea how it can impact a family. By sharing your story, we hope that the next time your legislator considers a healthcare bill he or she will remember how it could impact you.
The 2014 Hemophilia Day at the Capitol will be Monday, January 27. On that day the General Assembly will introduce a resolution recognizing Hemophilia of Georgia and the bleeding disorder community. We will visit with legislators and host a Hemophilia of Georgia table inside the Capitol. This coming year, our priorities will be to educate legislators on the economic impact of having a bleeding disorder. Many of them have never met a person with hemophilia or von Willebrand Disease. They do not know how expensive medications can be, or how important it is to have access to a treatment center and a pharmacy that specializes in caring for people with bleeding disorders. Educating lawmakers is one step in ensuring that our community continues to get the comprehensive care we need in order to live productive lives.
Of course, members of the bleeding disorder community do not advocate only one day out the year. Whether telling a school administrator about a child’s condition, or explaining the disorder to an in-law or other family member, or even educating an emergency room doctor, we consistently share our stories. So, why should we limit ourselves to just one advocacy day at the Capitol?
Although our official Hemophilia Day at the Capitol will be on Monday, January 27, we realize that some of you will be unable to make it on that day. You can still arrange a day to meet with your senator and representative. We invite you and your family to join us at the Capitol anytime between January 13, 2014 and April 30, 2014. If you would like to RSVP for Monday, January 27, or if you would like to schedule another day to meet your representative and senator, please contact Michelle Putnam at the HoG office. You can call her at 770.518.8272 or email her at mputnam@hog.org. You can also find out more by visiting our website.
Healthcare is always changing, and it is something that affects many facets of our lives: our health, our well-being, and our pocketbooks. Why not take the time to talk with the representatives and senators that make these decisions? Advocates like to say, “If you’re not at the table, then chances are you’re on the menu.” This year, we want to give you as many opportunities as possible to be at the table. We hope you’ll join us.