A mother of a 12-month-old child with spinal muscular atrophy (SMA) complained of a 'treatment cost problem' through a petition to the Blue House.
On the 7th, a petition titled, 'Please help children with myalgia receive the world's only gene therapy' was uploaded to the Blue House National Petition.
The petitioner said, "Currently, the child cannot control his neck and is living only lying down, and he is wearing a respirator because his breathing is unstable." Even if it is unstable, we have no choice but to go to the hospital, which is three hours away.”
Spinal muscular atrophy is a rare, intractable myopathy in which muscles gradually atrophy due to a genetic defect.
The petitioner said, "If not treated in a timely manner, it is a fatal disease that can lead to death two years ago.
The treatment mentioned by the petitioner is 'Zolgensma' from Novartis Korea, which was approved for use in Korea in May.
Zolgensma is a treatment known to have the effect of curing spinal muscular atrophy for a lifetime with just one administration.
However, since it is quite expensive, it is difficult for many patients to receive Zolgensma.
This is because the price of a single dose of Zolgensma is as much as 2.5 billion won.
The petitioner appealed, "The time is running out for the children. Please help us give our children a chance before it is too late."
According to the pharmaceutical industry, it is known that the Health Insurance Review and Assessment Service will soon bring Zolgensma to the Central Review and Assessment Coordination Committee to discuss whether to register it as a health insurance.
This is a 'news pick'.
(Photo = Yonhap News)