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🇰🇷 South Korea /Health & Science

Faster Access to Existing Treatments Urgently Needed for Rare Diseases

From Hankyoreh · () Korean

Translated from Korean, summarized and contextualized by DistantNews.

At a glance

In-depth Sources not specified Context piece
  • Patients with rare and intractable diseases are calling for faster access to existing treatments, not just new drug approvals.
  • The Korean government has pledged to take national responsibility for rare diseases, raising expectations for policy improvements.
  • Patient groups argue that the focus on new drug approval processes overshadows the urgent need to make currently available but unaffordable treatments accessible.

Patients battling rare and intractable diseases in South Korea are urging the government to prioritize faster access to existing treatments over the expedited approval of new drugs. Despite the government's commitment to a "national responsibility for rare diseases" and recent public hearings on fast-tracking treatment approvals, patient advocacy groups feel their immediate needs are being overlooked.

We have repeatedly petitioned the Anti-Corruption and Civil Rights Commission and the National Human Rights Commission to expedite treatment use for patients.

— Korean Association for Rare and Intractable DiseasesThe article mentions the association's efforts to push for policy changes.

The Korean Association for Rare and Intractable Diseases has been actively petitioning government bodies, including the Anti-Corruption and Civil Rights Commission and the National Human Rights Commission. Their primary concern is the current reimbursement criteria that often delay access to crucial medications until severe complications arise, leading to a loss of "golden time" for treatment.

Even though it is a severe rare disease, many patients in Korea are still not provided with adequate treatment opportunities.

— PNH Patient AssociationThis quote reflects the core issue of delayed treatment access for specific rare diseases.

One such group, the PNH Patient Association, highlighted the difficulties in accessing treatment for paroxysmal nocturnal hemoglobinuria (PNH). They argue that the existing criteria are too restrictive, forcing patients to endure severe complications before treatment becomes available. The association has seen a significant increase in member organizations, reflecting a growing number of patients seeking support and advocacy.

We consistently replied, 'We are unconditionally in favor of a system that speeds up treatment use, but patients must be able to feel that speed. Give us the treatment quickly, not a good system.'

— Patient groupsThis statement summarizes the patient groups' consistent message regarding treatment accessibility.

While the government's initiative to improve rare disease policies, including the fast-track drug approval system, has generated hope, patient representatives consistently emphasize that the speed of approval is less important than immediate accessibility. They advocate for clearing the backlog of "old" treatments that are already approved but remain out of reach due to cost or restrictive criteria. The recent public hearing on fast-track approvals, according to the association's secretary-general, felt more focused on the system itself than on the patients it is meant to serve, lacking sufficient patient input.

Let's start by clearing the old treatments first.

— Patient groupsThis quote emphasizes the priority of making existing, but inaccessible, treatments available.
DistantNews Editorial

Originally published by Hankyoreh in Korean. Translated, summarized, and contextualized by our editorial team with added local perspective. Read our editorial standards.

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