"Thanks to the good policy of the country, my child has been saved!" On January 4, Ms. He from Xinhua County, Hunan Province, brought her 2-and-a-half-year-old daughter Fiber (pseudonym) who suffers from spinal muscular atrophy (SMA) to Hunan Children's Hospital for treatment.
With the official implementation of the new version of the national medical insurance directory on January 1 this year, the original "sky-high price" life-saving drug of 700,000 yuan a needle was reduced to 33,000 yuan, bringing hope to the fiber fiber family.
On January 4, in the neurology ward of Hunan Provincial Children's Hospital, Wu Liwen, deputy director of the department, was examining the fibers.
"The child could not climb when he was 1 year old, and he took it to the hospital for examination only to find that he had a rare disease." Ms. He said bitterly that her daughter was diagnosed with spinal muscular dystrophy type II when she was 1 year old and 7 months old. Because of the high price of the drug, it is also impossible to treat after diagnosis. "When the child was more than 2 years old, he said, Mom, I want to walk, I want to go to kindergarten! I could only put my arms around her and cry. Now that we can afford to use medicine, there is hope for the child! ”
On January 4, 2022, nine children with spinal muscular dystrophy like fibrosis came to Hunan Children's Hospital to make an appointment for treatment, and they became the first patients to receive injections after the drug was included in medical insurance.
At the beginning of December 2021, the National Medical Insurance Bureau announced a batch of new drugs into medical insurance, and China's first imported drug approved for the treatment of spinal muscular dystrophy, Nocinasin Sodium Injection, finally entered the new version of the medical insurance drug list at a price of 33,000 yuan per needle.
Wu Liwen, deputy director of the Department of Neurology of Hunan Children's Hospital, introduced that spinal muscular atrophy (SMA) is a fatal disease for children, usually 80% of type I patients can not live past 2 years old; type II patients have difficulty walking and are often accompanied by serious pneumonia complications; although type III does not affect life expectancy, patients will be weak, causing a huge burden of disease and mental pain to their individuals and families. This disease is characterized by degeneration and loss of motor neurons in the spinal cord and lower brainstem, and is a rare disease of hereditary neuromuscular diseases. As the child progresses, muscle weakness can further lead to abnormalities in the skeletal, respiratory, digestive, and other systems, with respiratory failure being the most common cause of death.
In recent years, with the development of new therapeutic drugs and the improvement of treatment levels, more patients can achieve longer survival. According to experts, Northinalson sodium injection is an antisense nucleotide treatment drug for infants, children and adults with 5q type spinal muscular atrophy, and is also the first imported drug approved to treat spinal muscular atrophy in China. Doctors administer the drug to patients by intrathecal injection (injecting the drug into the body through lumbar puncture).
Wu Liwen told reporters that the fiber can currently sit alone, but can not walk, there has been no regression of motor function, the overall situation is still relatively good. For this type of patient, after receiving the injection of Nocinathene sodium injection, the child has the hope of standing up and even walking slowly.
Kang Qingyun (left) and Liu Shulei (right), neurologists at Hunan Children's Hospital, inject lele (pseudonym), a girl with spinal muscular dystrophy, into the hospital on January 4.
"Every life should be treated well." Wu Liwen said that children with spinal muscular atrophy, if not treated with drugs, the quality of life will become worse and worse, and in the end the whole body can not move, eating has difficulties. However, after the child takes the medicine in time, the general life expectancy will not be affected by the disease. Moreover, the children's motor function that has been lost can be slowly restored, and the value of treatment is great.
Reporter: Shuai Cai, Yao Yu
Produced by Shuaicai Studio, Hunan Branch of Xinhua News Agency
Correspondents: Yao Jiaqi, Xu Li, Su Lin