How Patient Stories Change Perspectives and Influence Lawmakers
About IBD24 Syys 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: Find Amber J Tresca at: Find Mac Cooney (mix, sound design, and theme music) at: 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.

Jaksot(200)

IBD in the Hispanic Community With Oriana Damas, MD

IBD in the Hispanic Community With Oriana Damas, MD

As an assistant professor of medicine in the Division of Gastroenterology at the University of Miami Miller School of Medicine, and the Director of Translational Studies for the Crohn's and Colitis Ce...

5 Joulu 202339min

Positivity Beats IBD With Josef Miller

Positivity Beats IBD With Josef Miller

What is it like to be a teen living with Crohn's disease? If you're like Josef Miller, you channel the challenges of the diagnosis and management of IBD into action. Josef has written a book about his...

28 Marras 202339min

Designer $hit: A Microbiome Love Story With Saffron Cassaday

Designer $hit: A Microbiome Love Story With Saffron Cassaday

What options are you wiling to try to manage your ulcerative colitis or Crohn's disease? How about putting someone else's stool into your own colon? Fecal microbiota transplants (FMTs) — using stool f...

14 Marras 202327min

Coping With IBD While in Military Service With Dr Anish Patel

Coping With IBD While in Military Service With Dr Anish Patel

What do all the new oral drugs available for treating IBD have to do with military service? Being diagnosed with IBD might mean leaving the military for some service members. Part of the reason is tha...

8 Marras 202344min

Learning to Accept IBD

Learning to Accept IBD

Being diagnosed with a chronic condition is a major adjustment. Digestive conditions like IBD (Crohn's disease and ulcerative colitis) wind up affecting every part of our lives. Learning to accept the...

24 Loka 202328min

IBD and Menopause

IBD and Menopause

Menopause is a topic that's not well understood in general and there's even less information when it comes to menopause and inflammatory bowel disease (IBD, Crohn's disease and ulcerative colitis). Oc...

17 Loka 202314min

Having a Screening Colonoscopy

Having a Screening Colonoscopy

Colon cancer is being diagnosed more frequently in younger people. It's now recommended that most people get a screening colonoscopy at the age of 45. For people who have a family history of colon ca...

26 Syys 202339min

Managing IBD Diet and Lifestyle With Clemmie Oliver

Managing IBD Diet and Lifestyle With Clemmie Oliver

Diet does matter in inflammatory bowel disease (IBD). Not only in how it affects the digestive system, but also in overall health. Adults with IBD have greater incidences of heart disease, lung diseas...

12 Syys 202351min

Suosittua kategoriassa Terveys ja hyvinvointi

unicast
voi-hyvin-meditaatiot-2
tiedenaiset-podcast
vakeva-elama-viisaampi-mieli-vahvempi-keho
psykopodiaa-podcast
rss-pitaisko-erota
katilon-kahvitunti
puhu-muru
rss-uplevel-by-sonja-hannus
rss-rakas-mielenterveyteni
rss-narsisti
terapiassa
rss-ehjaksi
rss-duodecim-lehti
rss-vapaudu-voimaasi
selviytyjat-tarinoita-elamasta
rss-pt-paahtio
rss-eropodi
rss-mighty-finland-podcast
rss-kyykkya-ja-kuoharia