Easy Advocacy

By Michelle Putnam, Associate Director of Research and Advocacy

When was the last time you educated someone about bleeding disorders? Some of you may have educated a family member on what it means to have hemophilia. Some of you may have spoken to a school nurse about von Willebrand Disease and what it means. Or, maybe you've shared a post on Facebook with friends, explaining some of the myths surrounding bleeding disorders. As members of the bleeding disorder community, education and advocacy come along with everything else: it's something that you do so often, you almost forget you are doing it!

One of the most important places you can continue your advocacy is at the Georgia State Capitol. Talking to legislators about your bleeding disorder can increase general awareness about the health needs of our community. At Hemophilia of Georgia, we consistently educate lawmakers about both the financial and health impact of having a bleeding disorder. Over the years we have succeeded in sustaining funding for uninsured people with hemophilia and have kept the state from moving disabled Medicaid patients into for-profit managed care companies. This year, we need your help to do it again!

Hemophilia Day at the Capitol will take place on Monday, January 27, from 8:00 am to 1:00 pm. The Georgia General Assembly will adopt a resolution on the floor of the House of Representatives, recognizing the bleeding disorder community. We hope you will join us on that day, but if you cannot, there's still time to meet with your legislators! This year, in addition to our official Hemophilia Day at the Capitol, we will also host families throughout the legislative session. Anytime from January through the end of March, you can call the HoG office and speak with Michelle Putnam to set up a time to tour the Capitol and meet your legislators.

Talking to legislators about your bleeding disorder is easy – because you're the expert! You can share with them the health consequences of having a bleed, and how infusing regularly helps reduce these consequences. You can also share with them the financial impact of having hemophilia. Many legislators have no idea how much factor costs or that many people infuse at home. You can share with them the importance of having access to a hemophilia treatment center and a pharmacy that specializes in bleeding disorders.
 
Advocacy is about putting things in perspective, and we can all do our part by sharing our own stories and educating those around us.  Here are some ways that you can advocate in your own community:

• Schedule a visit to the Capitol. Even if you can't make it downtown on Monday, January 27, you can still schedule a time to meet your senator and representative. Call the HoG office or email Michelle Putnam at mputnam@hog.org to schedule a day to tour the Capitol.
• Write a short letter to your local paper about how important your HTC and the HoG pharmacy are in helping you manage your bleeding disorder. We will help you tell your story. Contact Michelle Putnam at mputnam@hog.org or call the HoG office for assistance.
• Share Hemophilia of Georgia Facebook updates with family and friends.

Remember that the difference you make is measured in more than just laws.  It's also measured in education and understanding, and you can help make a difference just by sharing your story. We'll see you at the Capitol this legislative session!