At around 8:30 am on January 11, in the operating room of Dongguan Children's Hospital, 8-year-old girl Li Jia was lying quietly on her side. The injection of Nosinarenol sodium injection, which dropped from nearly 700,000 yuan to 33,000 yuan per injection, was slowly passing thr

2025/07/0707:04:36 hotcomm 1964
html At around 8:30 am on January 11, in the operating room of Dongguan Children's Hospital, 8-year-old girl Li Jia was lying quietly on her side.

, which has been shot with a drop from nearly 700,000 yuan to 33,000 yuan per injection, is slowly passing through the intervertebral space between the L3 and L4 sections of her lumbar spine, injected into the subarachnoid cavity, and spreading in the cerebrospinal fluid.

This is the first shot received by patients with spinal muscular atrophy (SMA) in Dongguan. It is the long-awaited good news that Dongguan SMA patients have been waiting for since the "soul bargaining" by Zhang Jinni, a negotiator of the National Health Insurance Administration in November 2021. It is a "New Year gift" given to children by Dongguan Children's Hospital.

At around 8:30 am on January 11, in the operating room of Dongguan Children's Hospital, 8-year-old girl Li Jia was lying quietly on her side. The injection of Nosinarenol sodium injection, which dropped from nearly 700,000 yuan to 33,000 yuan per injection, was slowly passing thr - DayDayNews

Outside the operating room, Lijia's mother Ms. Chai was waiting anxiously. She looked at the operating room door over and over again, and what appeared before her was a scene after scene after a 1-year-old child was diagnosed at the Third Affiliated Hospital of Guangzhou Medical University in July 2015.

Along the way, thorns are growing.

That day, the doctor told her, "The United States is currently studying drugs for this disease. I don't know when it will succeed. If the condition is serious, it will be difficult for the child to live beyond two years." She was stunned, tears fell in a string, holding the child tightly, unable to believe it, and I don't know how to get home.

After she arrived at home, she wiped her tears and started searching for information online, and found the SMA forum and SMA QQ group. On the day she joined the group, two SMA children passed away. At that moment, she was desperate, scared, and had no fighting spirit.

God did not give her a chance to think randomly. Before the family could adjust their mood, the child started to have a fever. He had only had a little snot in the morning, and had to be hospitalized in the afternoon after pneumonia. Every day, listening to the child's whirling sound, her heart never calmed down.

The patient warmed her up. "A mother of a patient in the United States teaches us how to take care of her, how to use auxiliary equipment, and how to use medical devices. We learn and accept it slowly. The home is like a rehabilitation center, like a small ICU, and the child's condition is gradually stable."

On December 23, 2016, the world's first SMA precision targeted therapy drug, Nosinaceous Sodium Injection, was approved in the United States for the first time. On April 28, 2019, Nosinaren sodium injection was launched in China. Ms. Chai was ecstatic, and she and her mothers saw hope.

However, at that time, each injection of Nosinaren sodium injection required 697,000 yuan. 6 injections were injected in the first year, and then 3 injections were injected every year, all of which were at your own expense. This is an unbearable burden for ordinary families. Until December 3, 2021, the National Health Insurance Administration announced that the Nosinaren sodium injection was included in medical insurance.

Ms. Chai said, "My child's medicine, Noxina, has entered medical insurance! The brilliant spring is coming!" The parent group of parents of SMA patients in Dongguan was full of joy.

Li Jianwei, director of the Department of Pediatric Neurology at Dongguan Children's Hospital, was very pleased. As early as October 2021, he heard from the manufacturer of Nosinara Sodium Injection, "The price is about to be reduced, and medical insurance is about to be obtained." At that time, he contacted Ms. Chai to discuss how to use medicine for Lijia as soon as possible. After the news that

was announced that it had entered medical insurance, on December 20, Li Jianwei submitted an application to the hospital for the purchase of 10 Nocinarin sodium injections. Nocinarin sodium injection disease is not included in the hospital's drug list and needs to be discussed and approved by the hospital's pharmacy committee to purchase it temporarily.

Dongguan has long implemented zero price difference for drugs, Nosinaren sodium injection worth 33,180 yuan per pill. The price is bought by the hospital and the price is also used by the patients. If the use of Nocinarin sodium injection, which costs 33,180 yuan per pill, the patient will squeeze out the hospital's social security funds after the patient is reimbursed.

application was handed over. Zhong Baimao, Secretary of the Party Committee and Director of Dongguan Children's Hospital, did not hesitate at all, "Buy it quickly!" As long as the child can be saved, no matter how much social security funds can be squeezed out.

htmlOn January 7, after coordination by the factory, the first batch of three nusinase sodium injections were finally sent to Dongguan Children's Hospital. The hospital purchased special storage equipment to carefully protect this precious drug.

htmlOn January 8, Ms. Chai took Li Jia to the hospital. After completing the relevant examinations, she was waiting for the first injection.

html At 8 a.m. on January 11, Rica was pushed into the operating room. The team of Li Jianwei, director of the Department of Pediatric Neurology, and Liu Qingren, director of the Department of Anesthesiology, are ready. Liu Qingren guided the doctor to perform local anesthesia for Lijia to ensure that the child starts his recovery journey smoothly.

, director of the Pharmacy Department, Ye Weijun, appointed a special person to carry a special box and send a nusina sodium injection. After both parties confirmed that it was correct, they handed the medicine to the doctor. The pharmacist accompanied the whole process during the operation. If it is a normal operation, there is no need to send someone to the pharmacy department to deliver the medicine.

At around 8:30 am on January 11, in the operating room of Dongguan Children's Hospital, 8-year-old girl Li Jia was lying quietly on her side. The injection of Nosinarenol sodium injection, which dropped from nearly 700,000 yuan to 33,000 yuan per injection, was slowly passing thr - DayDayNews

Nocinarin sodium injection only has 5 ml. According to the instructions for use of the drug, intrathecal injection is required, that is, the drug is directly injected into the subarachnoid cavity through lumbar puncture, so that the drug is dispersed in the cerebrospinal fluid and acts directly on nerve cells.

Li Jianwei said that during the operation, a puncture was performed between L3 and L4 of the lumbar spine, and 5 ml of cerebrospinal fluid was first extracted. Then, take out the medicine from the refrigerator and put it in your hands to heat it and thaw it to 25 degrees; then inject 5 ml of the medicine into it very slowly for about 3 minutes.

surgery is very successful. After spending half an hour in the resuscitation room, when Lijia was pushed out, her mother ran away quickly. She looked at the child, turned around and kept thanking the medical staff.

htmlOn the afternoon of January 16, in the pediatric neurology ward, my mother and sister were playing with Li Jia in a wheelchair. Ms. Chai said, "The child is in good condition now and will definitely get better and better."

At around 8:30 am on January 11, in the operating room of Dongguan Children's Hospital, 8-year-old girl Li Jia was lying quietly on her side. The injection of Nosinarenol sodium injection, which dropped from nearly 700,000 yuan to 33,000 yuan per injection, was slowly passing thr - DayDayNews

Lijia is a second-grade student. Her grades are A in every subject. The school teachers and classmates in the class regard her as treasures and protect her. In order to be able to push Li Jia in a wheelchair to play, her classmates applied for a "driver's license test" to Ms. Chai, which moved her mother who had been studying with her.

According to the regulations of the manufacturer of the nocinarenin sodium injection, 4 loading doses are given on days 0, 14, 28 and 63, and maintenance doses are given every 4 months thereafter. Now, Li Jia is hospitalized for rehabilitation and is preparing to go home for the New Year after the second injection on January 25th.

is in the same ward as Ritzan, and the 3-year-old boy Qihang has also received the first injection of sodium nocinarine. In Li Jianwei's computer table, on January 27, 8-year-old Beibei and almost 4-year-old An An will receive the first injection; next is 12-year-old David, 11-year-old Yiyi, 6-year-old Wenwen...

The schedule for injecting sodium from 11 SMA children in Dongguan has been scheduled.

html more than 30,000 yuan per shot of medicine, the self-paid after social security reimbursement may only be more than 100,000 yuan, from millions of medical expenses in the past year to no more than 100,000 yuan a year, from the stable condition of the child to normal admission to school, and then taking medicine, Ms. Chai said, "I think there is nothing impossible in life."

"Just work hard to move forward. If you can have today, I really thank the country, the party, the government, and the hospital. I am glad that I was born in this promising era in the future!"

text/Guangzhou Daily·Xinhua City Reporter: Wang Wanli

Source: Guangzhou Daily

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