Introducing the Hemophilia Advisory Board

Horizons in Hemophilia, November 2012

By Michelle Putnam, Associate Director of Research and Advocacy

In September 2012, a group made up of hemophilia specialists, nurses, physicians, and patients sat down with the Commissioner of Public Health and the Commissioner of Community Health to discuss one very specific goal: to ensure that people with hemophilia and other inherited bleeding disorders have access to quality and affordable care. This formal discussion was the first meeting of the Georgia Hemophilia Advisory Board which was created by law in 2011.

The Hemophilia Advisory Board is comprised of physicians, nurses, social workers, and members of HTCs. Most importantly, the Board is required to have the following people as members:

• a person living with hemophilia
• a person living with a bleeding disorder other than hemophilia such as  von Willebrand Disease
• a caretaker of a person living with a bleeding disorder.

Each year, the Hemophilia Advisory Board will make recommendations to the Governor about standards of care and insurance coverage.  Other states that have Hemophilia and Bleeding Disorder Advisory Boards include Illinois, Iowa, and Texas. You can read the text of the law online. 

This may not be the first time you have heard about the Hemophilia Advisory Board. In 2009, a similar law was passed by the House and the Senate, but was ultimately vetoed by Governor Sonny Perdue. It wasn't until 2011 that the legislation was rekindled.  This time it found its way through the entire legislative cycle and was signed by Governor Nathan Deal in May 2011.

You may ask, “what good does this do?” The answer is, plenty. Hemophilia is a rare condition, which means at times it can be difficult for us to get our voices heard at the Capitol. Hemophilia is also complex, which means the issues we face as a community can't always be addressed in a half-hour meeting with a legislator. The Hemophilia Advisory Board is an opportunity to make sure that when state leaders make a decision, they will know how it will impact people in the bleeding disorder community.

How much does the state really affect your insurance or how you get your medications? Plenty. For instance, state insurance commissioners monitor regulations regarding what kinds of benefits your insurer is required to offer and it sets the rules about  appealing a provision in your insurance. If you happen to have Medicaid, the state has even more influence.  The state develops Medicaid preferred drug lists and prior authorization rules.

When it comes to bleeding disorders, these decisions can have a major impact. That's why it is important that our community not only contacts legislators during Hemophilia Day at the Capitol, but that we have ongoing communication with other state leaders.

It has been years in the making, but the long journey has proven well worth it. The Hemophilia Advisory Board is an important step in making sure legislators, policy makers, and the people making the big decisions about health and insurance in our state are familiar with the challenges our community faces. If you have any questions about the Board or its recommendations, please email Michelle Putnam at mputnam@hog.org.