Presentation (CTI)

OBJECTIVES: To identify and classify the informal mechanisms through which patients, patient advocacy groups (PAGs), and civil society have catalyzed access outcomes for medicines, therapies, or policy across 15 jurisdictions outside the US and EU.
METHODS: We conducted a targeted desk review of 15 jurisdictions (Australia, Brazil, China, India, Indonesia, Japan, Mexico, Philippines, Saudi Arabia, South Africa, South Korea, Taiwan, Thailand, UAE, Vietnam). Utilizing publicly available sources including academic and news articles and websites published between 2016 to 2026, case studies were identified and selected based on the following criteria: (1) informal mechanism (not formal government processes or standing committee seats); (2) patients, PAGs, or civil-society as initiating or catalytic contributor for access outcomes; and (3) documented link to access outcomes (product access or new policy/law/program).
RESULTS: 29 cases met inclusion criteria across 13 of 15 jurisdictions. Cases mapped to six non-mutually exclusive archetypes of patient-driven access influence: coalition legislation and policy (n=12); PAG campaigns driving reimbursement, registration, or supply restoration (n=9); PAG-led litigation, including amparo and writ proceedings (n=7); IP and patent-reform advocacy (n=4); patient-led monitoring of medicine shortages and coverage denials (n=2); and PAG-operated financial-access programs codified into policy (n=1). Among disease-specific cases, disease areas included rare diseases (n=13), oncology (n=9), HIV and hepatitis C (n=2) and kidney disease (n=1).
CONCLUSIONS: Informal patient engagement can shape access with regionally distinct patterns: Latin American cases were litigation-heavy; Southeast Asian cases emphasized coalition-driven legislation and benefit-package expansion; HTA-mature and emerging Asian jurisdictions showed hybrid PAG-campaign and policy engagement; South African cases concentrated in IP and patent-reform mobilization. No qualifying Gulf case was identified, suggesting patient engagement there operates predominantly within state-linked and royal-patronage PAG structures alongside formal healthcare architecture. Coalitions across patient, clinician, legal, and donor partners were recurring advocacy units, with multi-year ecosystem investment outperforming episodic engagement. Findings are indicative and case based.