26 August 2025 - Last Thursday, people gathered in front of HIRA in Seoul, holding signs that read, “Ignoring doctors' opinions is murderous bureaucracy,” “Don't turn away adult patients—they have the right to treatment,” “Expand coverage completely,” and “Reviewing based on feelings instead of standards? Patients' lives aren't a gamble.”

Currently, the only approved treatment for neurofibromatosis is AstraZeneca's new drug Koselugo (selumetinib). Koselugo has been covered by insurance since January 2024 for children 3 to 18 years of age with type 1 neurofibromatosis accompanied by inoperable trunk neurofibromas. However, for patients who received the drug through clinical trials prior to reimbursement and are deemed to require continued treatment after turning 19, reimbursement is recognised if objective reasons and a treatment recommendation letter are submitted.

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