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DIFFICULTIES IN TREATING RARE DISEASES
입력 2022.06.07 (15:10) 수정 2022.06.07 (16:46) News Today
자동재생
동영상영역 시작
동영상영역 끝
[Anchor Lead]

There are many rare diseases that even sound unfamiliar. Recently, gene therapies have been developed to treat such conditions. With a very small number of patients up for them, the high-tech developments cost hundreds of millions of won in many cases. This makes it impossible for the patients to even try out the therapies unless they are covered by health insurance.

[Pkg]

This 17-month-old boy suffers from a rare condition called the spinal muscular atrophy. Due to his underdeveloped muscles, he cannot sit up or eat food on his own. Recently, a single-shot injection that replaces mutated genes causing the condition and treats the disease fundamentally was developed. But its price is 2.5 billion won. Fortunately, health authorities last month decided to have this treatment covered by health insurance.

[Soundbite] (Patient’s Father) : "We expect he will get a little better if he takes the drug earlier. We shed tears of blood at the heart and always feel anxious."

However many patients with other rare conditions are unable to receive treatments, since they are not covered by insurance. Eom Jae-yong suffers from a rare condition caused by amyloid proteins accumulating in the heart. With the heart’s function weakening, the patient can die from cardiac failure. The 46-year-old patient’s father also
died from the same condition two years ago.

[Soundbite] Eom Jae-yong(ATTR-CM Patient) : "My father was struggling with the disease. He apologized for leaving the nasty, difficult disease to his oldest son."

There is gene therapy that keeps the disease from progressing. However, the drug costs 200 million won a year and Eom cannot afford it.

[Soundbite] Eom Jae-yong(ATTR-CM Patient) : "I will have to give up on the drug if its price goes beyond my financial capability."

With the advancement of gene therapies, treatments for rare diseases have come out one after another. But most of them are not covered by health insurance. It is because only a small number of patients require them while they are very expensive, making it difficult to analyze the effectiveness in comparison to the costs. So many of the patients have no other option but to give up on the treatment due to unbearable financial burdens.

[Soundbite] Kim Jin-ah(Association for Patients with Rare and Incurable Diseases) : "For patients whose treatments have been developed, it is the government’s responsibility to receive treatments at the very least and keep their hopes."

Health authorities plan to conduct fact-finding studies and make more rare disease treatments applicable for health insurance coverage.
  • DIFFICULTIES IN TREATING RARE DISEASES
    • 입력 2022-06-07 15:10:14
    • 수정2022-06-07 16:46:33
    News Today
[Anchor Lead]

There are many rare diseases that even sound unfamiliar. Recently, gene therapies have been developed to treat such conditions. With a very small number of patients up for them, the high-tech developments cost hundreds of millions of won in many cases. This makes it impossible for the patients to even try out the therapies unless they are covered by health insurance.

[Pkg]

This 17-month-old boy suffers from a rare condition called the spinal muscular atrophy. Due to his underdeveloped muscles, he cannot sit up or eat food on his own. Recently, a single-shot injection that replaces mutated genes causing the condition and treats the disease fundamentally was developed. But its price is 2.5 billion won. Fortunately, health authorities last month decided to have this treatment covered by health insurance.

[Soundbite] (Patient’s Father) : "We expect he will get a little better if he takes the drug earlier. We shed tears of blood at the heart and always feel anxious."

However many patients with other rare conditions are unable to receive treatments, since they are not covered by insurance. Eom Jae-yong suffers from a rare condition caused by amyloid proteins accumulating in the heart. With the heart’s function weakening, the patient can die from cardiac failure. The 46-year-old patient’s father also
died from the same condition two years ago.

[Soundbite] Eom Jae-yong(ATTR-CM Patient) : "My father was struggling with the disease. He apologized for leaving the nasty, difficult disease to his oldest son."

There is gene therapy that keeps the disease from progressing. However, the drug costs 200 million won a year and Eom cannot afford it.

[Soundbite] Eom Jae-yong(ATTR-CM Patient) : "I will have to give up on the drug if its price goes beyond my financial capability."

With the advancement of gene therapies, treatments for rare diseases have come out one after another. But most of them are not covered by health insurance. It is because only a small number of patients require them while they are very expensive, making it difficult to analyze the effectiveness in comparison to the costs. So many of the patients have no other option but to give up on the treatment due to unbearable financial burdens.

[Soundbite] Kim Jin-ah(Association for Patients with Rare and Incurable Diseases) : "For patients whose treatments have been developed, it is the government’s responsibility to receive treatments at the very least and keep their hopes."

Health authorities plan to conduct fact-finding studies and make more rare disease treatments applicable for health insurance coverage.

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