Your Day to Make A Difference
Horizons in Hemophilia, January 2013
Hemophilia Day at the Capitol |
By Michelle Putnam, Associate Director of Research and Advocacy
Every year the Georgia bleeding disorder community gathers in Atlanta for Hemophilia Day at the state Capitol. Each year, we talk with our representatives about what it means to live with a bleeding disorder. These topics include the challenges that come with caring for our children, paying for insurance, and ensuring that we are not defined solely by our diagnoses. This year, we will gather at the Capitol on Monday, February 11 to discuss access to factor for the uninsured and ways to make sure that people with bleeding disorders have access to comprehensive care.
Those of you who have not attended Hemophilia Day at the Capitol may ask, “What good does it do for me to talk to my legislator?” Some of you who have been in earlier years may ask, “Why would I need to talk to my representative again? In this day and age, what good does it do?” The answer is plenty.
In 2011, families convinced their legislators to restore money to the state's budget for factor for uninsured people with bleeding disorders. This restored funding helped Hemophilia of Georgia continue its Bleeding Disorder Assistance Program and ensured that people got the factor they needed.
In 2012, families spoke to legislators about how the elimination of lifetime caps and pre-existing conditions clauses had helped them gain access to insurance. Talking about the good things in the Affordable Care Act, including the Pre-Existing Condition Insurance Plan, helped our representatives understand how the law benefitted people with hemophilia.
In 2013, we will advocate once again to restore funding into the state budget for the uninsured, but our efforts this year will hinge on something bigger. In 2014, Georgia has the option of extending its Medicaid program to adults who make less than $15,000 a year (or $26,000 for a family of three). Many working adults today may not get insurance through their jobs and may not be able to afford it in the individual market. This expansion is fully funded by the federal government until 2016, and after that will be 90% funded by the federal government. It is a good deal for Georgia. The Medicaid expansion not only ensures that working families have insurance, but it will also bring in billions of dollars into the state's economy.
I encourage you and your family to join us for Hemophilia Day at the Capitol. It is a way to educate others and to remember that at the end of the day, our government should represent our values. And the only way we can ensure this is to show up and be a part of it. Please email Michelle Putnam at mputnam@hog.org or call 770-518-8272 to RSVP.