Spring into the Capitol
By Michelle Putnam, Associate Director of Research & Advocacy
Spring is a lovely time to visit Washington, DC. The winter snow has melted and the cherry blossoms are in bloom, blanketing the city with a layer of pink. At least, this is what HoG staffers Michelle Putnam, Maria Manahan, and Michelle Fitzwater managed to glimpse from the plane as they flew into the city for the annual Hemophilia Alliance Hill Day. Rather than enjoy the spring weather, they put a spring in their step and pounded the marble halls of the Capitol in order to talk with members of our Congressional delegation about the importance of funding Hemophilia Treatment Centers.
People in the bleeding disorder community know how important it is to have access to the expert care at Hemophilia Treatment Centers. Taking care of a bleeding disorder means learning how to infuse and making sure you have insurance, and that you have access to medication when you need it. This requires a team of people, including physicians, nurses, social workers, and pharmacists. Believe it or not, this model of care, where people work together to help ensure a patient is healthy, isn’t the norm in healthcare. Hemophilia Treatment Centers have been recognized for decades for the care they provide.
As a result, Hemophilia Treatment Centers receive some grant funding from the federal Maternal Child & Health Bureau. This funding has stayed flat for about a decade, but there is another federal program that really enables Hemophilia Treatment Centers to fund comprehensive care for the bleeding disorder community. The 340B program, a part of the Public Health Service Act, was instituted in 1992 in order to provide additional services and support for vulnerable or uninsured people. The program allows certain entities, like Hemophilia Treatment Centers, to purchase drugs at a discounted rate. Any revenue from the sale of these medications must then be used to support services for the community. This program greatly supports our Hemophilia Treatment Centers in Georgia and allows us to provide infusion training, home visits, and other services.
Recently, Congress has been discussing this 340B program, which has grown to include more providers, like hospitals, in recent years. Some think it needs to be revised; some think it needs to change. During the course of this discussion and debate, it has been Hemophilia of Georgia’s goal to ensure that legislators understand the importance of this program in funding hemophilia care. In recent Congressional hearings, people have cited Hemophilia Treatment Centers as an example of how this program should work.
Maria, Michelle P., and Michelle F. met with several Congressional staffers throughout the day, and also got to meet with Congressman Buddy Carter, who was nice enough to pose for a photograph with Michelle P. and Maria. Fortunately, our Congressional delegation continues to be supportive of the Hemophilia Treatment Centers in Georgia and wants to ensure that they continue to provide an expert level of care for people in the bleeding disorder community.