When Lived Experience Becomes a Calling: Building Advocacy Around IBD and Better Care

What does it take to turn lived experience into lasting change for patients? Gail Attara joins Ursula Mann and Anne-Marie Hayes to share how growing up with a mother living with Crohn’s disease shaped her commitment to advocacy. Together, they explore the impact of inflammatory bowel disease beyond the gut, the importance of medication coverage, and the work behind patient organizations. Gail also offers candid insights into funding, accountability, and what meaningful collaboration requires to build better, more individualized care. **Episode Highlights** - **02:25 — Why healthcare cannot be one size fits all:** Gail’s red-stiletto analogy illustrates why policies must reflect different patient needs. - **03:22 — Three decades of advocacy:** Gail introduces the two organizations she leads and explains the origins of the Gastrointestinal Society. - **04:19 — When lived experience becomes a calling:** Her mother’s experience with Crohn’s disease—and the blame she faced—helped shape Gail’s advocacy. - **08:01 — New hope in IBD treatment:** Moving beyond symptom management toward therapies that can change the course of disease. - **09:00 — Trusted education and medical collaboration:** How gastroenterologists help review patient resources and support advocacy. - **10:20 — IBD beyond the gut:** Exploring mental health, the gut–brain connection, and the broader burden of chronic illness. - **11:48 — Medication approval versus coverage:** Why an available treatment may still be out of reach for the person who needs it. - **12:18 — Why patient organizations matter:** Helping people navigate healthcare, access reliable information, and evaluate an organization’s credibility. - **19:11 — Ethics and independence:** Gail discusses fundraising boundaries and her organizations’ approach to product endorsements. - **22:53 — Making patient voices part of drug reviews:** Gail reflects on advocating for patient-group submissions to the Common Drug Review. - **25:41 — Care that recognizes individual needs:** Why treatment coverage must account for differences between patients. - **28:05 — Behind the scenes of collaboration:** Funding pressures, unequal workloads, and fair compensation. - **31:09 — Supporting patients in everyday life:** Employer education and free resources bring digestive-health information into workplaces and communities. - **36:57 — Advocacy in action:** Helping connect a patient needing an intestinal transplant with political support. - **39:47 — What authentic collaboration requires:** Respect, addressing harmful behaviour, and returning to a shared mission. **Links and Resources** - Connect with Gail Attara on LinkedIn - Gastrointestinal Society and Canadian Society of Intestinal Research - GI Society Programs and Services - Patient Voice Partners — Learn More or Join Patient Voice Connect **About Gail Attara** Gail Attara is Chief Executive Officer and Co-Founder of the Gastrointestinal Society and President of the Canadian Society of Intestinal Research. With three decades of leadership in patient advocacy, she champions trusted digestive-health education, patient involvement in healthcare decisions, and better access to appropriate treatment. Her family’s experience with chronic illness helped shape her commitment to keeping patients at the centre of care. **Disclaimer:** The views and opinions expressed by guests on Amplify are their own and do not necessarily reflect those of the podcast, its hosts, Patient Voice Partners, or its affiliates. **Medical Disclaimer:** **The content shared on Amplify is for informational and educational purposes only.** Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations. Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.