Easy Advocacy

Horizons in Hemophilia, January 2012

By Michelle Putnam, Associate Director of Research and Advocacy

Many of you have attended Hemophilia Day at the Capitol and talked with legislators about the importance of affordable, continuous health coverage for people with bleeding disorders.  As we head into Georgia’s legislative session, it is important to remember that you can be an advocate anywhere.  Talking with friends and community members about your bleeding disorder can increase general awareness about the health needs of our community. 

At Hemophilia of Georgia, we consistently talk to lawmakers and community members about the important aspects of the Affordable Care Act that will benefit people with bleeding disorders.  Although recent polls show that the majority of Americans support individual provisions in the health law, many people are still receiving misinformation about what the law does.  You can do your part by talking about the provisions that are most useful to you and will most likely be helpful to other people in your community. 

For example, the law allows children to stay on their parents’ insurance plan until the age of 26, which has helped many young adults with bleeding disorders continue to have access to clotting factor.  Or, maybe you were close to hitting your lifetime cap under your insurance policy.  Under the Affordable Care Act, these caps are eliminated, thus saving people with bleeding disorders the time and hassle of finding another insurance carrier.  Children younger than 19 with a bleeding disorder used to have difficulty finding health coverage, but under the Affordable Care Act insurers cannot deny them because of a pre-existing condition.  Come 2014, they won’t be able to deny adults, either.
 
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 act as an advocate in your own community:

• Schedule an in-service at your child’s school with your HoG Outreach Nurse
• Write a short letter to your local paper about how important your HTC and HoG are in helping you manage your bleeding disorder
• Share Hemophilia of Georgia Facebook updates with family and friends.

At the end of the day, it’s important to remember that the difference that you’re making can be measured in more than just laws being passed.  It can be measured in education and understanding, and you can help make a difference just by sharing your story.