About IBD24 Sep 2025

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: https://bit.ly/AIBD186 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: https://www.keepingmyshittogether.com
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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