PNH patients urge South Korea to reform insurance coverage

Patient advocacy groups in South Korea are calling for urgent reforms to health insurance coverage criteria for Paroxysmal Nocturnal Hemoglobinuria (PNH), a rare disease characterized by the continuous destruction of red blood cells. The Korea Rare and Intractable Disease Association and the PNH Patient Association recently submitted a petition signed by 5,040 individuals to members of the National Assembly.

Currently, insurance coverage for C5 inhibitors, such as Soliris and Ultomiris, is only granted after patients develop severe complications like thrombosis, renal failure, or pulmonary failure. Advocates argue this structure forces patients to wait until they suffer irreversible organ damage before receiving life-saving treatment. They emphasize that preventing these complications is more effective than treating them after they occur.

Additionally, groups highlighted a gap in care for patients who continue to suffer from anemia, extreme fatigue, and the need for repeated blood transfusions despite existing treatments. They are requesting expanded access to oral medications, such as AstraZeneca’s Voydeya, which are currently not covered by insurance. The advocates also urged the government to refine its rapid listing pilot program for rare disease drugs to ensure that the presence of existing treatments does not prevent the approval of new therapies that address unmet patient needs.