South Korean rare disease patients urge health insurance reform

Patients and industry representatives in South Korea are calling for reforms to the health insurance reimbursement system to improve access to treatments for severe and rare diseases.

During a policy forum at the National Assembly, members of the Paroxysmal Nocturnal Hemoglobinuria (PNH) patient group urged lawmakers to revise current criteria. They argued that patients are often forced to wait until serious complications, such as kidney failure, occur before they can qualify for insurance coverage. They proposed that treatment should be allowed based on medical necessity and physician judgment before irreversible damage occurs, and that coverage should be maintained to ensure stable treatment.

The Korea Research Pharmaceutical Industry Association (KRPIA) also participated, advocating for a shift in how new drugs are viewed—from a mere financial cost to a social investment that reduces long-term medical and caregiving expenses. The KRPIA called for the expansion of the ‘100-day rapid listing pilot program’ to include more rare diseases and cancer types, ensuring that innovative medicines reach patients more quickly while managing fiscal sustainability through value-based models.