S7, Ep 22- Voices from Capitol Hill: Advocating Together for Autoimmune Patients

We’re joined by Amanda Krzepicki, Policy Director at the Autoimmune Association. We talk about the long process of getting legislation passed, top issues the Autoimmune Association is advocating for, and how patient groups can come together to make a difference. Among the highlights in this episode: 00:59: Amanda discusses her early career experiences and how they led her to patient advocacy, particularly focusing on autoimmune diseases 02:21: Amanda describes the work and impact of the Autoimmune Association, emphasizing its global outreach and patient support initiatives 03:08: Amanda explains the complex process of turning a bill into law and how patients can influence this process to result in more patient-friendly outcomes 05:33: Amanda gives a detailed account of recent successful advocacy efforts related to Medicaid drug rebates, highlighting the collaborative nature of these efforts 07:14: Amanda and Steven Newmark, Chief of Policy at GHLF, discuss the unintended consequences of rapid policy changes and the importance of thorough consideration and dialogue 08:47: Amanda and Steven stress the significance of forming coalitions among patient groups to strengthen their advocacy efforts 10:04: Amanda reveals how checking social media profiles of staff members helped reduce her nervousness before meetings with stakeholders 11:01: Steven and Amanda discuss how personal connections can aid in advocacy efforts, making legislative staff more relatable and approachable 11:22: Amanda outlines the current top issues she is working on, including the Safe Step Act and other legislative measures aimed at improving health care accessibility 14:28: Steven and Amanda emphasize the critical role of unity among patient advocacy groups in driving policy changes and achieving collective goals 15:57: What our hosts learned from this episode Contact Our Hosts Steven Newmark, Chief of Policy at GHLF: [email protected] Zoe Rothblatt, Director of Community Outreach at GHLF: [email protected] A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF. We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected] Catch up on all our episodes on our website or on your favorite podcast channel.See omnystudio.com/listener for privacy information.