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Horizons in Hemophilia, April 2013

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

This past March, most people in Washington, DC were focused on one word: sequestration. Legislators had a deadline looming and their days were spent talking budget cuts, national debt, and deficits. But, nine volunteers from the Georgia bleeding disorder community and three HoG staff members helped change the conversation by participating in the National Hemophilia Foundation's Washington Days. We had a great team join us in Washington DC from February 27 through March 2: Stephen, Anna-Kay, Chelsee, Deshayla, Emily, Jordan, Anthony, Ricardo, and Kasey.

Our goal at the Capitol this year was clear, but challenging. With legislators making spending cuts a top priority, we wanted to make sure that they knew how valuable Hemophilia Treatment Centers are to the bleeding disorder community. Federal programs like The Maternal and Child Health Bureau and the Centers for Disease Control and Prevention help fund HTCs and data collection that helps further bleeding disorder research. Both of these programs will more than likely see budget cuts because of sequestration.

In addition to maintaining support for HTCs, we also spoke to legislators about insurance issues facing people with bleeding disorders. Some insurers are introducing specialty tiers, a fourth tier in their formularies for specialty medications that require a person to pay co-insurance rather than a co-pay. Sometimes, these co-insurance rates can be as high as 30 percent. Our volunteers explained to legislators how expensive factor can be, and how important adherence to a treatment schedule is in keeping people healthy and productive. The National Hemophilia Foundation has worked with other groups to introduce The Patients' Access to Treatment Act (HR 460), which would limit an insurer’s ability to create a specialty tier.  Our goal was to get Georgia representatives to sign on in support of the bill.  Although many of our legislators voiced concern about the high cost of medication, some were reluctant to sign onto the legislation. But, we were successful in convincing Representative John Lewis, a Democrat from the 5th District, to sign on to HR 460 as a co-sponsor.

Our volunteers did a tremendous job representing the Georgia bleeding disorder community. After attending an advocacy training session on Wednesday evening, they arrived at the national Capitol ready to talk business. They not only impressed Hemophilia of Georgia staff members Michelle Putnam, Jeff Cornett, and Michelle Fitzwater, but they also impressed our legislators. Representative Tom Price's office even posted a picture of our team on his official Twitter account.

A highlight for one volunteer group was getting the chance to meet Representative John Lewis. Representative Lewis has represented the 5th District for over twenty-five years, but is also known for being one of the "Big Six" leaders of the Civil Rights era. As Chairman of the Student Non-Violent Coordinating Committee (SNCC) and a member of the original thirteen Freedom Riders, he marched along with Dr. Martin Luther King, Jr. in cities across the South and spoke at the historic March on Washington in 1963. His office in Washington is a treasure trove of mementos from his service, and our volunteers got a dose of history as they listened to him and asked questions.

After spending a day at Capitol Hill, our team had a chance to see Washington, DC and learn a little about its history. We toured the Capitol building, the Library of Congress, and got a chance to experience several of the Smithsonian museums. We packed a lot into our trip, but our Hemophilia of Georgia volunteers not only had a blast and represented our community very well, they can't wait to go back to the Capitol one day and do it all over again!  Thank you to our volunteers for serving your community!