South Korean President pledges to enhance support for patients with rare diseases

Seoul, Dec 24 South Korean President Lee Jae Myung met on Wednesday with patients suffering from rare diseases and their families and promised to enhance government support so they can receive the necessary medical treatment without excessive financial burden.

Lee visited the Heavy Ion Therapy Research Institute at Yonsei Cancer Center in western Seoul, which offers cutting-edge cancer treatment, on Christmas Eve as part of his outreach to the socially vulnerable group, Yonhap News Agency reported.

"Ensuring treatment for patients suffering rare diseases is not something individuals can easily bear on their own," he said.

Lee acknowledged that patients with rare conditions often receive less attention and support because of their small numbers, despite the government's efforts to enhance medical services for them.

"Every life is precious," he said. "It's not right that people are left behind, disadvantaged or isolated simply because they are few. This is a difficult issue."

Although the government has prepared policies to improve treatment, diagnosis and welfare support, Lee admitted that some measures have yet to be implemented or remain insufficient.

During the visit, accompanied by Health Minister Jeong Eun-kyeong, Lee said he would collect feedback from patients and their families to improve services for them.

Patients with rare diseases often face heavy financial burdens and difficulties obtaining imported medicines due to regulatory hurdles.

Meanwhile, Lee Jae Myung apologised to victims of toxic humidifier disinfectants blamed for deaths and diseases involving thousands of people, saying the government will define the case as a "social disaster."

In 2011, sales of such toxic sterilisers were suspended as health authorities announced they could cause lung diseases. A special law was enacted in 2017 to compensate victims, and 5,942 people were formally recognised as victims as of last month.

"It was too late," Lee said in a Facebook posting, adding he "conveys condolences and consolation to the victims and their families."

In 2017, then-President Moon Jae-in apologised to the victims, but Lee's apology came as the government announced comprehensive measures to compensate and support the victims earlier in the day.

Last year, a court recognised the state's liability to compensate humidifier disinfectant victims or their bereaved families for the first time.

The case gained attention after four pregnant women died of lung disease for unknown reasons in 2011.

"It is hard to fathom how unjust and devastating it must have been to live in a reality where no one was held accountable," Lee said.

"We will fundamentally review the entire system and management framework to ensure that a tragedy like this never happens again," Lee said, stressing the state's responsibility to protect people's lives and safety.

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