NHF Washington Days 2019

On March 27-29, over 450 people from 47 states traveled to Washington D.C. to meet with their elected officials on Capitol Hill. Each year the National Hemophilia Foundation hosts this impactful event to allow the bleeding disorder community an opportunity to speak with legislators regarding current health policy issues, including maintaining patient protections under the Affordable Care Act (ACA). Hemophilia of Georgia took a large group that represented the Georgia bleeding disorder community well. The Georgia team included HoG staff Edith Rosato, Nichelle Sims, and Jeff Cornett; HoG Board member Linda and her husband Peter; HoG Junior Board members Joseph, Bryce, and Molly; HoG Youth Leaders in Training Amaya and Kassidy; and five trained advocates from HoG’s Bleeding Disorder Advocacy Program - Savannah, Michelle, Luis, Julia, and Rhonda.

On a surprisingly warm and sunny Thursday, we walked to Capitol Hill wearing red ties to support Bleeding Disorders Awareness Month. The Georgia team split up into three constituent groups to attend meetings in the offices of ten of Georgia’s members of Congress. Representative Rob Woodall took a few minutes in between votes to speak with our group about our health insurance concerns and part of the group spoke briefly with Representative John Lewis on the steps of the Capitol after he finished voting on the floor. We also met with congressional staffers in Senators Johnny Isakson’s and David Perdue’s offices and in the House we met with staffers in the offices of Representatives Lucy McBath, Hank Johnson, Austin Scott, Jody Hice, Rick Allen, Tom Graves, and John Lewis. All the meetings were friendly and engaging. Several of the staffers were new, so we provided a brief “bleeding disorders 101” introduction, including client stories of how our lives are affected by our bleeding disorders. The new staffers were eager to learn about bleeding disorders and to discuss our current health policy concerns.

In addition to educating about bleeding disorders, we had two main issues to discuss with the lawmakers:

• Maintaining federal support for bleeding disorders by furthering research and enhancing prevention and access to care in the National Institutes of Health, Centers for Disease Control and Prevention, and the Health Resources and Services Administration.
• Ensuring access to insurance by opposing short-term health insurance plans and protecting people with pre-existing conditions. The short-term insurance plans do not provide comprehensive coverage and jeopardize access to insurance for people with pre-existing conditions since they do not have to include the patient protections of the ACA: elimination of lifetime and annual limits; elimination of pre-existing conditions exclusions; creation of essential health benefits; and limits on out-of-pocket expenses.

Every person living with a bleeding disorder should have access to quality, affordable health insurance and treatment that will enable them to live productive lives. We are thankful that the Georgia Congressional delegation is generally supportive of our health care concerns, and that these annual meetings allow us to reiterate how critical their legislative support is to the bleeding disorder community. We will keep in touch with staffers and continue to build partnerships with members’ offices. It was an exciting and productive trip full of Hill visits and sightseeing.  We thank all of HoG’s volunteer advocates for their continued efforts to ensure access to care and insurance for everyone in the bleeding disorder community.