Last December
The first approved treatment in mainland China
Imported medicine for spinal muscular atrophy
Northinalsan sodium injection
Encountering a "soul bargain"
From a needle nearly 700,000 yuan
Reduced to $33,000 per needle
And from this year to implement the new drug price
This greatly reduces the out-of-pocket portion of patients
This made the Yangyang family light up hope
His parents arrived at the hospital as soon as possible
Applying for treatment for your child...
Yang Yang (pseudonym) was diagnosed with spinal muscular atrophy (SMA) at the age of 1 and a half years old, a rare autosomal recessive genetic disease that causes hypotonia and motor delay, which will further lead to abnormalities in the skeletal system, respiratory system, digestive system and other systems as the disease progresses, which is seriously life-threatening. However, in the face of nearly 700,000 yuan a needle of sky-high drug costs, the Yangyang family can not afford it.
Due to the disease for many years, coupled with muscle weakness and muscle atrophy, the bones, especially the spinal structure, have undergone great changes, resulting in difficulty in locating the puncture point. The Department of Neurology of the First Affiliated Hospital of Dalian Medical University has set up a multidisciplinary diagnosis and treatment team led by neurology and participated in by multiple disciplines, and cooperated with experts from multiple departments to jointly carry out multidisciplinary diagnosis and treatment for patients.
According to the actual situation of Yangyang, the condition and puncture site were accurately assessed, so that the intrathecal injection treatment of "Northinal Sodium" was successfully completed. It is understood that the 20-year-old Yangyang became the first adult patient in Liaoning Province to use the drug under the medical insurance policy.
It is understood that in addition to Yangyang, there are 5 children with spinal muscular atrophy in our city who have received treatment. In addition, several patients are applying for treatment.
Text: Dalian News Media Group reporter Chang Ting
Image: Courtesy of the interviewee