‘Need to strengthen access to NMOSD treatments’

Calls for reimbursement criteria reform

Even a single relapse can lead to blindness or paralysis—stressing the importance of early treatment

Experts and patient groups: “Innovative new drugs must be guaranteed as an option from the early stages”

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Mi-hwa Seo (Democratic Party of Korea, Health and Welfare Committee), Korea NMOSD Patients’ Association, and the Korea Organization for Rare Diseases held a policy discussion forum at the National Assembly on improving access to neuromyelitis optica treatment.

On the 25th, Rep.

 

Mi-hwa Seo (Democratic Party of Korea, Health and Welfare Committee) held a policy forum at the National Assembly Hall to strengthen treatment access for neuromyelitis optica spectrum disorder (NMOSD).

 

The forum was co-hosted by Rep.

 

Seo, the Korea NMOSD Patients’ Association, and the Korea Organization for Rare Diseases.

 

NMOSD is a rare disease where even a single relapse can lead to irreversible disabilities like blindness or paralysis.

 

However, domestic reimbursement criteria require conditions such as experiencing two or more relapses within a year after using ‘MabThera (rituximab)’, meaning patients must experience a relapse before they can use the new drug.

 

This has drawn criticism from both patients and experts.

 

This forum was held to address these systemic limitations and discuss ways to expand early treatment access.

 

In the first presentation, Professor Ki-hoon Kim of the Department of Neurology at Severance Hospital, pointed out the issues present in the domestic reimbursement environment through the ‘Proposals for Improving Treatment Accessibility for Neuromyelitis Optica Spectrum Disorder.” Professor Kim said, “Although these therapies can prevent relapses, the unreasonable reimbursement criteria prevent patients from accessing them early.

 

Early use of new drugs must be guaranteed to prevent unnecessary relapses and the accumulation of disabilities.” Patient Bo-ram Park followed with a presentation conveying patients' realities through ‘A Relapse-Free Life and Challenges for Early Treatment: Insights from Patient Experience’.

 

Park appealed, “After a long diagnostic odyssey, treatment begins, but patients often resort to off-label drugs or discontinue treatment due to side effects.

 

While there are new drugs with a 0% relapse rate, they remain outside the reimbursement scope, leaving patients at continued risk of relapse.” The subsequent panel discussion was chaired by Professor Yong-jin Kwon of Seoul National University Hospital's Public Healthcare Center.

 

Participants included: ▲ Jong-cheol Choi, caregiver for a patient with neuromyelitis optica spectrum disorder (NMOSD); ▲Eung-gyu Park, caregiver for a patient with NMOSD; ▲ Yeon-sook Kim, Director of the Pharmaceutical Benefit Division at the Ministry of Health and Welfare; ▲ Kook-Hee Kim, Director-General of Pharmaceutical Management at the Health Insurance Review and Assessment Service (HIRA); and ▲Yoon-Ho Eo, Dailypharm reporter, who discussed directions for improving the system for NMOSD.

 

Participants highlighted common goals: alleviating patient and caregiver suffering caused by repeated relapses, introducing relapse-preventing drugs at earlier stages, and improving reimbursement standards to reduce long-term care and treatment costs.

 

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Seo concluded, “Although NMOSD has only been recognized as an independent disease for about 20 years, advances in medical technology now allow us to prevent relapse-related disabilities.

 

Major countries have already reformed their systems so patients can use approved therapies from the outset.

 

Korea must also make institutional improvements so patients don’t have to endure unnecessary relapses.”