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: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
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