Beyond the boardroom: how the Lions’ Den is redefining patient-industry dialogue at the International PBC Summit 2026 Written by Becky Pender, senior associate, RARE Revolution Magazine

https://rarerevolutionmagazine.com/beyond-the-boardroom-how-the-lions-den-is-redefining-patient-industry-dialogue-at-the-international-pbc-summit-2026/ The International PBC Summit has long been heralded as a crucial meeting point for all stakeholders invested in primary biliary cholangitis (PBC). Yet, year after year, it is the distinctive and often challenging Lions’ Den session that captures the greatest attention and drives the most profound outcomes. Taking place on day three of the summit, the Lions’ Den is not a passive forum or a polished presentation, but a direct, structured dialogue specifically designed to confront a central challenge in modern healthcare: the persistent lack of transparent and equal access for patients and advocates to the pharmaceutical companies developing their treatments. The Summit saw approximately 20 patient advocacy groups (PAGs) attend, with four pharmaceutical companies participating in the session. This one-to-many relationship creates a uniquely controlled and transparent environment for engagement. The structure itself is simple yet highly effective: a company presents its work, insights or pipeline, followed immediately by a dedicated Q&A session where PAGs lead the questioning on topics ranging from new treatments and clinical trial design to the often-thorny issue of access to therapies. The rotation ensures every participating company is engaged one at a time, guaranteeing all PAGs participate in each interaction, thereby ensuring equity in access to knowledge. The anatomy of trust and accountability The core value of the Lions’ Den format lies in its capacity to create a rare space where PAGs can engage with industry as equal stakeholders. This standardisation is crucial for levelling the playing field. By ensuring that every company receives the same amount of time, the same format and is subjected to the same type of questioning, the mechanism reduces the inherent power imbalance that frequently exists between large, well-resourced pharmaceutical companies and smaller patient organisations with limited experience in high-stakes negotiations. In this environment, PAGs are freed from the necessity to ‘perform diplomacy’ constantly. Instead, the format encourages genuine openness and accountability while maintaining respect. As one patient advocate described, this structure provides a necessary safety net: “For smaller organisations especially, standardisation creates safety. It gives everyone the same opportunity to participate and ensures that the patient perspective is not overshadowed by influence, size or funding capacity.” – patient advocate The discussions that emerge are often far more direct and practical than those in traditional settings, covering difficult questions about access, timelines, affordability, communication and unmet needs, which might otherwise be glossed over in overly polished or general meetings. “The core value is creating a rare space where patient advocacy groups can speak openly and directly with industry as equal stakeholders. The format fosters honesty and accountability.” – PAG member