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When you hear the words Alzheimer's disease, what do you think of? The truth is, the picture most of us have of the disease is incomplete. Alzheimer's disease doesn't start when someone starts to lose their memory. It actually starts years – sometimes decades – earlier. The Rethinking Alzheimer's Disease Podcast is an engaging, narrative-style podcast miniseries for those curious or motivated to learn about Alzheimer’s disease. Perhaps you have a family member with Alzheimer’s disease, or ca ...
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A routine dental visit, a few days of diarrhea, and then the unthinkable: septic shock and a life lost within 24 hours. Our guest, Christian John Lillis, shares how losing his mother Peggy to a community-acquired C. diff infection exposed a silent public health crisis and led him to co-found the Peggy Lillis Foundation (https://cdiff.org/). From that moment, advocacy turned concrete: raising awareness, training volunteers to speak with lawmakers and media, and pushing for policies that reflect the true burden of C. diff and other infectious diseases.
We dig into what a modern, patient-centred clinical trial should look like. Christian explains why initial cure is not the only outcome that matters; for C. diff, the recurrence rate can define whether someone can work, travel, or care for family. We unpack why decentralized trials, telehealth diagnostics, and home nursing can transform access, speed up recruitment, and improve diversity—critical for evidence that holds up in real life. We also examine antibiotic stewardship, exploring how pathogen-targeted therapies can reduce collateral damage and help fight antimicrobial resistance while maintaining or improving efficacy and tolerability.
Policy and incentives are central. Christian outlines the limits of market-driven R&D for smaller but deadly pathogens like VRE and CRE, and why tools such as GAIN, LPAD, and potential subscription models are needed to fund anti-infectives society desperately requires. We talk global spread, declining vaccination, and the communications gap that leaves many people vulnerable to misinformation. On the personal level, he shares practical steps for self-advocacy: bring someone to urgent visits, prepare questions, be firm and respectful, and share your story to fuel change.
If you care about patient advocacy, clinical trial innovation, C. diff awareness, antibiotic resistance, and public health, this conversation offers both a roadmap and a rallying cry. Subscribe, share with a friend who works in healthcare, and leave a review telling us one change you’d make to make trials truly patient centred.
Transformation in Trials is a podcast investigating how we can change life sciences to get treatment to patients faster.
Getting treatment to patients faster requires well-functioning organizations. How do we do that? Ivanna Rosendal has written a book called Maneuvering Monday, about how a group of people try to make their organization better. You are certain to have a good laugh at their expense. And potentially get inspired how you can help make your company better.
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Chapters
1. From Grief To Global Advocacy For Clinical Research In Infectious Diseases with Christian John Lillis (00:00:00)
2. Setting The Stage: Advocacy Focus (00:01:03)
3. Christian’s Roots In AIDS-Era Activism (00:01:53)
4. The Loss Of Peggy And C. Diff Awakening (00:04:02)
5. Founding The Peggy Lillis Foundation (00:06:36)
6. What A Patient Advocacy Org Does (00:08:52)
7. Partnering With Life Sciences Ethically (00:11:00)
8. The Challenge Of Enrolling C. Diff Trials (00:12:40)
9. Decentralised Trials And Access (00:14:55)
10. Rethinking Endpoints Beyond Cure (00:16:27)
11. Antibiotic Stewardship And Tolerability (00:19:33)
12. Global Spread, Vaccination, Public Health (00:21:18)
13. Incentives For Anti‑infectives And Policy (00:23:35)
14. How Patients Advocate For Themselves (00:26:10)
15. Prevention, Costs, And Trial Efficiency (00:29:12)
16. The Magic Wand: Patient‑Centred Trials (00:31:27)
85 episodes
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