Criticism is mounting that Korea’s low drug pricing policy and rigid reimbursement system are causing epilepsy patients to miss the “golden time” for treatment.
Experts warn that while timely therapy can reduce seizures by 70–90 percent and enable patients to return to normal daily life, access to necessary treatments remains limited, leading to repeated delays in care.
Shin Won-chul, a professor of neurology at Kyung Hee University Hospital at Gangdong, described the domestic treatment landscape as one where "therapies exist but cannot be used, or are never introduced at all."
He made the remarks at a policy forum titled “Addressing Gaps in Epilepsy Treatment” held at the National Assembly Members’ Office Building on Friday. The event was hosted by Rep. Lee Ju-young of the Reform Party.
At a policy forum hosted by Rep. Lee Ju-young on Friday, experts warned that Korea’s low drug pricing and rigid reimbursement system are causing epilepsy patients to miss critical treatment windows. (KBR photo)
Professor Shin cited Brivaracetam as a typical example.
"Brivaracetam, proven overseas and urgently needed, is restricted for most Korean patients due to pricing, only entering as a generic after the patent expires," Shin said.
He also cited cenobamate, a novel antiseizure medication developed in Korea, as a key case where domestic access lagged behind overseas use. Pharmaceutical companies have delayed or abandoned domestic launches due to low pricing, even as the drug has already been approved and used in the United States and Europe.
“Although it was developed in Korea and is already in use abroad, it could not be used domestically for six years because of pricing issues,” Shin said. “Even highly effective therapies remain inaccessible to patients.”
Even essential therapies are becoming unstable. Shin warned that production of basic treatments such as Phenytoin injection has been halted due to low prices, while supplies of emergency medications like Fosphenytoin remain inconsistent. "We are facing situations where first-line therapies needed in emergency rooms may not be available," he said.
Professor Shin noted that domestic treatment prices are only about 40 percent of global levels, discouraging pharmaceutical companies from maintaining supply or launching products in Korea.
"Access gaps are widening -- essential drugs are disappearing, new therapies are delayed, and patients face increasing treatment risks," he said.
The pediatric crisis is acute. Korean children lack access to home-use emergency medicines for early seizure control, leaving them exposed, while doctors risk reimbursement penalties for providing urgent care.
Kim Jon-soo, a professor of pediatric neurology at Chungbuk National University Hospital, shared a case of a four-year-old patient who experienced seizures for nearly an hour at home before being admitted to intensive care.
Professor Kim explained that in other countries, nasal emergency medications are kept at home for early seizure control, but they have not been introduced in Korea.
Kim also noted that even Levetiracetam injections used in emergencies are not reimbursed for pediatric patients, requiring prior consent for out-of-pocket treatment. “It is questionable whether it is realistic to obtain consent from guardians while a child is actively seizing,” he said.
Professor Kim further pointed out that effective drugs such as Lacosamide are frequently denied reimbursement due to age restrictions, despite widespread pediatric use abroad. “Approval and reimbursement standards fail to keep pace with clinical reality,” he added.
Kim Heung-dong, chairman of the Korea Bureau for Epilepsy, warned that delays in reimbursement have left patients untreated. “Every lost moment is critical,” he said, emphasizing cenobamate’s potential for patients facing surgery.
'Distorted reimbursement system excludes patients with severe conditions'
Rep. Lee, who chaired the session, criticized structural flaws in the reimbursement system. “The current national health insurance framework is designed around mild and common conditions, leaving patients with severe or rare diseases reliant on non-reimbursed treatments,” she said. “This has created a distorted system where those who can pay more receive faster care.”
Lee proposed reorganizing reimbursement to prioritize rare and severe diseases, introducing a fast-track system for new drugs, and strengthening state responsibility in risk-sharing.
Government agrees on the need to expedite listing procedures
Government officials acknowledged the need for improvement but emphasized balancing reforms with fiscal sustainability. The Ministry of Health and Welfare said it plans to enhance access and supply stability through measures such as fast-track listing for rare disease therapies, expanded risk-sharing agreements, and improved pricing evaluations.
Kim Yeon-sook, director of the Pharmaceutical Benefits Division at the ministry, said, “Limited access to new therapies and unstable supply of essential treatments are critical issues consistently raised in the field.”
She added that expanding coverage for high-cost therapies requires social consensus and safeguards to maintain the sustainability of the National Health Insurance system.
The Health Insurance Review and Assessment Service (HIRA) said it is reviewing reimbursement for key new therapies.
Lee Sook-hyun, head of the New Therapy Listing Department, said, “Cenobamate is currently under evaluation for coverage, with both clinical usefulness and cost-effectiveness under review. Epidiolex is also being assessed for expanded indications.”
She added that new antiseizure therapies such as brivaracetam are moving through listing procedures, with efforts underway to shorten review timelines and improve access.
Kim Eun-young
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