Advocates in Action! Hemophilia of Georgia joins the National Bleeding Disorder Foundation for 2024 Washington Days
Hemophilia of Georgia (HoG) continues its advocacy efforts alongside advocates nationwide, joining together in Washington, D.C. for the National Bleeding Disorder Foundation’s (NBDF) 2024 Washington Days from March 6-9. Rebecca Babkiewicz, Director of Telehealth, Michelle Conde, Senior Director of Advocacy, Jennifer Crabbe, Director of Nursing, and Robert Gillespie, Interim CEO, spearheaded the delegation. They were accompanied by Jennifer Pharaoh, HoG’s Washington lobbyist, as well as a group of dedicated volunteers, members of our board, and advocates Louis Conde, Owen Crabbe, Ian Mackay, Brad White, Donnell Warren, and Jennifer Warren.
HoG’s group of 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 went into meeting after meeting with courage and determination to share their personal stories and explain why the support of legislators meant 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. We 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.
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.