Advocates in Action! Hemophilia of Georgia joins the National Bleeding Disorders Foundation for 2025 Washington Days
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) 2025 Washington Days from March 5-7. Michelle Conde, Senior Director of Advocacy and Rebecca Babkiewicz, Director of Telehealth spearheaded the delegation.
They were accompanied by Jennifer Pharaoh, HoG’s Washington lobbyist, HoG Board Member, Donnell Warren, and advocates Jennifer Warren, Stephanie Rehberg, Leigh Wells, the Cody family, and the Niebuhr 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 and explained why the support of legislators means so much to our community.
Our advocates urged members of Congress to focus on language and legislation that will improve patient access to care, including strengthening and broadening the use of telehealth. Our group shared information about HoG’s telehealth program and services. A significant number of patients struggle with their Hemophilia Treatment Center (HTC) appointments due to geographic, commuting, and time challenges. To help them overcome barriers to care, HoG partnered with the Augusta Adult HTC to launch our Comprehensive Care Model Telehealth Program in 2021. Our staff and volunteers shared data and stories about how access to care has been life-changing for patients who have gone years without the necessary treatment to manage their bleeding disorders. HoG and advocates encouraged members of Congress to work on a permanent extension of the telehealth flexibilities launched during the COVID-19 pandemic. Telehealth is now an essential component of health care delivery, and we need to ensure that it remains a widely available option.
The group also advocated to protect and fund the federal health programs that support research and comprehensive care at Hemophilia Treatment Centers, reject health care cuts including cuts to Medicaid, and for support of the Help Ensure Lower Patient (HELP) Copays Act to ban insurer practices that harm people who take specialty medications.
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.
