How Patient Stories Change Perspectives and Influence Lawmakers

Every person living with inflammatory bowel disease (IBD) can help change public policy by sharing their story and participating in advocacy events, such as visiting legislators in Washington, D.C. Amber talks to Kelly E. Dwyer, who teaches us how to prepare an elevator speech and gives us practical tips for Hill Day logistics, working within teams, staying emotionally resilient, and following up with staffers. Advocacy is for everyone, and persistence and collaboration can lead to real policy changes to benefit the IBD and chronic illness communities. By the end of the episode, you'll have the real resources you can use to do this work as a patient advocate both locally and nationally. This episode is sponsored by Connecting to Cure . Transcript and more information: Chapters: 00:05 Introduction and Guest Background 01:23 The Role and Nature of Patient Advocacy 02:37 The Long Game of Advocacy: Successes and Challenges 04:37 Advocacy vs. Activism and Personal Motivation 06:05 The Importance of Patient Stories in Advocacy 06:52 Crafting and Delivering Your Elevator Speech 11:46 Managing Emotions and Practicing Your Story 15:42 Preparing for Advocacy Day: Research and Teamwork 18:07 Training and Building Confidence for Hill Visits 20:58 Coordinating with Your Advocacy Team 22:38 Practical Logistics: What to Wear and Security 24:42 Navigating Capitol Hill: Accessibility and Facilities 29:26 Managing the Day: Scheduling and Flexibility 32:17 During the Meeting: Structure and Communication 36:04 Group Dynamics and Respectful Storytelling 40:29 Building Relationships and Following Up 42:12 How to Get Involved with Advocacy Groups 44:42 Financial Considerations and Accessibility 45:17 Encouragement and Closing Thoughts on Advocacy 47:12 Lessons Learned the Hard Way 50:33 Closing Remarks and Gratitude 51:22 Outro and Credits Topics on this episode: Overview of inflammatory bowel disease (IBD), including Crohn's disease and ulcerative colitis. Personal experiences of living with IBD and the impact on daily life. The role of patient advocacy in improving healthcare policies and patient rights. Challenges faced by patients regarding insurance barriers and treatment access. Importance of sharing personal stories with legislators to influence policy change. Distinction between activism and advocacy in the context of healthcare. Strategies for effective communication and preparation for advocacy efforts. The significance of teamwork and collaboration in advocacy initiatives. Resources and organizations that support IBD advocacy and patient education. Emotional aspects of sharing health experiences and the importance of building relationships with legislative staff. Find Kelly E. Dwyer at: Web: Twitter: @keepingmyshitTG Instagram: @keepingmyshittogether Find Amber J Tresca at: AboutIBD.com : About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party , is from ©Cooney Studio. These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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How Patient Stories Change Perspectives and Influence Lawmakers is an episode from About IBD by About IBD With Amber J Tresca.

This episode is 52:23 long.

This episode was published on Sep 24, 2025.

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