Session (CTI)

ISSUE: In the Asia-Pacific (APAC), over 258 million people live with a rare disease, yet only a third receive the best evidence-based care. One contributing factor is the fragmented, largely top-down way many health systems engage patients, clinicians and other stakeholders in access and reimbursement decisions. While meaningful progress has been made, patient input remains supplementary in most appraisal processes across the region. The session will debate whether incremental reform is sufficient, or whether health systems need to move decisively toward partnership models where stakeholders share greater influence, responsibility and decision-making power. OVERVIEW: Multistakeholder engagement in access decisions making has been a subject of discussion for many years, but the conversation hasn’t effectively moved on from ‘why it’s important?’ to ‘how to achieve it?’. This shift is critical for rare diseases; with small populations and limited data, deep collaboration is the only viable path to accurately determining value. The session is structured as a moderated issue panel with three panellists representing payer, patient advocacy, and researcher. The moderator will deliver a 10-minute opening presentation to set the scene followed by a 10-minute presentation by each panellist. Representing the payer perspective, Fiona Pearce will explore practical approaches to overcoming barriers to integrating patient-generated evidence into appraisal processes. As a patient advocate, Ekawat Suwantaroj will share perspectives on how to address barriers to collaboration and how patient groups may act as catalysts. Raoh-Fang Jasmine Pwu will address the dual role of researchers guiding policy direction and supporting other stakeholders (e.g., patients, clinicians and manufacturers) in providing meaningful input. The session will culminate in moderated discussion and audience Q&A. The session targets payers, HTA decision-makers, patient advocates, researchers, clinicians, and industry stakeholders involved in rare disease policy or access strategies in APAC. Participants will gain insight into how different health systems and stakeholders are promoting collaboration.