A Rainy but Successful Hemophilia Day at the Capitol

Horizons in Hemophilia, March 2013

By Michelle Putnam, MPH, Associate Director of Research and Advocacy

The rain didn't stop brothers Jason and Justin C. who wanted to share their stories with legislators. The Hemophilia of Georgia group gathered at Central Presbyterian Church for breakfast and a brief training session before walking across the street to the Capitol Building. This year, our main focus was on the money in the state budget allocated for medication and insurance premiums for people with hemophilia. Specifically, our goal was to get the General Assembly to restore all of the funding for HoG’s Bleeding Disorder Assistance Program.

Legislators were in session, which meant that the Capitol was buzzing with representatives, senators, staff members, and constituents.  In the morning, both the House and Senate spend time in formal session. It's during this time that invocations and resolutions are read and bills that have passed through Committee are read aloud for members to then cast their vote. During this time our HoG clients "worked the ropes."  This is a process by which a volunteer page takes a note into the chamber and gives it to the legislator with whom we want to speak while we wait just outside of the chamber doors behind a velvet rope. When the legislator is able to duck out of the formal session, he will come speak with us for as long as he can.

Our HoG clients, social workers, and nurses spoke with several key senators who listened attentively as our clients shared their stories. One of the first questions each senator asked was, "So where are you from?" Legislators always want to make sure that they are speaking with a constituent, or someone who lives in their district, because it is constituents who vote to keep them in office. Jason and Justin were able to speak with their senators, sharing their personal stories and also discussing the importance of factor and access to timely treatment, all while keeping their legislators engaged. 

The House of Representatives did not go into its formal session until 1:00 p.m., due to various committee meetings. Representative Matt Dollar from Sandy Springs formally recognized Hemophilia of Georgia from the floor and the entire House of Representatives applauded HoG members who sat in the House Gallery. This is not only a wonderful recognition, it also goes a long way in making sure that when legislators sit down to look at whether a bill is good or bad, they will remember Hemophilia of Georgia.  And, they’ll also remember the stories our clients shared about how important access to medication and comprehensive care is in making sure that people with bleeding disorders live healthy, productive lives.

In fact, our Hemophilia Day at the Capitol helped convince the General Assembly to restore almost all the funding in the current fiscal year's budget for the Bleeding Disorder Assistance Program. That is a great start and we are now working with both the House and the Senate to get full funding for the new fiscal year. Thank you to all of you who attended in person and who made calls to your legislator. You all helped make Hemophilia Day at the Capitol a great day for the entire bleeding disorder community.