South Korean rare disease insurance reform advocacy

Patient advocacy groups and industry representatives in South Korea are campaigning for reforms to the national health insurance reimbursement system to improve access to treatments for rare and severe diseases.

Initially, Paroxysmal Nocturnal Hemoglobinuria (PNH) patient associations submitted a petition to the National Assembly, signed by over 5,000 individuals. They argued that current insurance criteria for C5 inhibitors only allow coverage after patients suffer irreversible complications like renal or pulmonary failure. Advocates requested expanded access to oral medications and a refinement of the rapid listing pilot program for rare disease drugs.

During a subsequent policy forum at the National Assembly, the discussion expanded to include the Korea Research Pharmaceutical Industry Association (KRPIA). The KRPIA advocated for viewing new medicines as a ‘social investment’ that reduces long-term medical and caregiving costs rather than just a financial expense. They also called for the expansion of the ‘100-day rapid listing pilot program’ to cover more cancer types and rare diseases, utilizing value-based models to balance patient access with fiscal sustainability.