National Bleeding Disorders Foundation (NBDF) Washington Days 2026
Hemophilia of Georgia (HoG) continues its advocacy efforts alongside advocates nationwide, joining together in Washington, D.C. for the National Bleeding Disorders Foundation’s (NBDF) 2026 Washington Days from March 4–6. This year’s delegation included Deniece Chevannes, Chief Policy & Compliance Officer; Rebecca Babkiewicz, Director of Telehealth; Stephanie Rehberg, Communications Manager; Jennifer Pharaoh, HoG’s Washington Lobbyist; and community advocates Jesús V., Billy T., and the Serbinski family. HoG’s advocates met with their respective Representatives and Senators to help educate legislators and their staff on bleeding disorders. HoG staff provided information about the work done by our organization to support those with bleeding disorders throughout Georgia. Our group of patient advocates bravely shared their personal bleeding disorder stories, demonstrating why legislative support is essential for our community.
Our advocates urged members of Congress to focus on legislation that will improve patient access to care, beginning with strengthening and broadening the use of telehealth. Many patients across Georgia struggle to attend their Hemophilia Treatment Center (HTC) appointments due to distance, commuting challenges, and schedule limitations. To help overcome these barriers, HoG partnered with the Augusta Adult HTC in 2021 to launch our Comprehensive Care Model Telehealth Program. During Washington Days, our staff and volunteers shared data and stories illustrating how access to virtual care has been life changing for individuals who previously went years without the treatment necessary to manage their bleeding disorder. HoG encouraged members of Congress to work toward a permanent extension of the telehealth flexibilities established during the COVID 19 pandemic, emphasizing that telehealth has become an essential and irreplaceable component of modern healthcare delivery.
In addition to telehealth, our group advocated to protect and fund the federal health programs that support research, public health surveillance, and comprehensive care at Hemophilia Treatment Centers. Federal bleeding disorder programs within the CDC and HRSA provide critical funding that support specialized care teams, research, and public health monitoring, all of which directly impact quality of life for those with bleeding disorders. Our delegation also urged lawmakers to support the Help Ensure Lower Patient (HELP) Copays Act to end insurer practices, such as copay accumulator adjustment programs, that harm people who rely on specialty medications by preventing copay assistance from counting toward their deductibles and out-of-pocket maximums.
HoG also advocated for the FED UP with Bleeding Disorders Act, which aims to improve recognition, diagnosis, and support for underserved populations—particularly women—whose bleeding disorders often go unnoticed or misunderstood.
Personal stories carry profound weight in swaying congressional action. If you or your family have encountered challenges due to copay accumulator programs, please reach out to Hemophilia of Georgia's Senior Director of Advocacy, Michelle Conde, at maconde@hog.org. Sharing personal experiences is instrumental in compelling lawmakers to enact meaningful change.
