At about 9 a.m. on January 1, in the treatment room of the Department of Neurology of the First Affiliated Hospital of Sun Yat-sen University, Mr. Du, a 29-year-old patient, picked up his clothes and lay on his side on the bed, preparing to undergo a lumbar puncture. What was about to be injected into his body was noxinassan sodium, a treatment drug for spinal muscular atrophy (SMA), which had attracted much social attention due to "700,000 yuan a shot".
Today, the National Basic Medical Insurance, Work Injury Insurance and Maternity Insurance Drug Catalogue (2021) was officially implemented, and 7 rare disease drugs such as sodium Northinals were officially included in medical insurance. On the first day of "insurance", nearly 20 SMA patients in hospitals in 11 provinces and cities such as Guangdong, Beijing, Shanghai, Zhejiang, Sichuan, Shandong, Hunan, Hubei, Fujian, Jiangxi and Henan will receive sodium treatment from Northinalson. Mr. Du is one of them.
scene
"Every drop of medicine is precious"
"Lean your head a little closer to your chest and arch your back a little more." Li Jing, attending physician of the Department of Neurology of the First Affiliated Hospital of Sun Yat-sen University, gradually guided Mr. Du to adjust his position. Mr. Du lay on the left side of the bed, bent knees and hugged the group, exposing the lumbar spine.
"The back and the bed should be kept as vertical as possible, and when the needle is pierced, it will be slightly oblique and slowly upward..." Zhang Cheng, chief physician and professor of the Department of Neurosurgery of Zhongshan First Hospital, came to the scene for guidance.
lumbar puncture
On the other side, doctor Xu Ruikai is already ready to go in the hospital pharmacy. He had an incubator in his hand containing a sodium injection of Nosina raw sodium that was cryopreserved at low temperatures. "You can bring the medicine." It didn't take long for him to receive instructions to deliver the medicine.
The tip of the needle plunged into the body, and Mr. Du clenched his fists. "Relax a little, breathe normally, and don't strain your stomach." The paramedics continued to patiently guide.
After the lumbar puncture was completed, the attending physician He Ruojie took the injection out of the cold incubator, held it in the palm of his hand, and warmed the injection to about 25 degrees Celsius. After 2 minutes, the temperature gun showed that the temperature of the injection was suitable.
Li Jing and He Ruojie cooperated and used a syringe to suck out 5 ml of Nocina raw sodium injection from a small bottle. "This step should be taken with special care, every drop of medicine is precious, and try to suck it into the needle tube."
After all the suction was taken out, Li Jing slowly injected the injection into Mr. Du's body and completed the treatment. After the injection, Mr. Du had to lie on the bed for 6 hours to avoid causing intracranial hypotension.
Northinacana injection
SMA is a rare disease in which patients may gradually feel weakness in their limbs, and the condition will get worse and worse and difficult to reverse. "I've felt a little weak from the age of 12, and after I was diagnosed with the disease in 2015, I feel that my strength has deteriorated every year." Mr. Du said. If left untreated, muscle strength in patients with SMA may gradually deteriorate, eventually causing infection and death due to problems with breathing or swallowing.
Nosinasin sodium is an antisense oligonucleotide drug, which can accurately target the cause of SMA, allow the human body to produce more motor neuromodulatory proteins, effectively improve the patient's exercise, breathing and other important functions, improve survival rate.
When entering China in February 2019, Nocinasin sodium injection was priced at 699,700 yuan per injection, and patients needed to inject 4 injections in the first 63 days and 1 injection every 4 months thereafter, for lifelong medication.
behind
High-value rare disease drugs "insured" for the first time
SMA is a rare disease, with a prevalence of about one in 10,000 in newborns, a small patient population and huge research and development costs, making Northinasan sodium a class of high-value rare disease drugs that attract much attention.
On December 3, 2021, the results of the adjustment of the national medical insurance catalogue were "officially announced", and 7 rare disease treatment drugs entered the medical insurance catalogue, including northinasan sodium.
"Previously, some SMA patients, especially some babies, interrupted their medical treatment due to excessive treatment costs or other reasons, which we felt particularly sorry for." As the doctor who prescribed the first batch of nosinassine sodium injection after entering the medical insurance directory, Li Jing said: "SMA is currently the number one genetic disease killer for babies under two years old. Nosinasin sodium is included in medical insurance, so that we 'have drugs available' and 'drugs dare to use', which truly benefits the SMA patient group. ”
Previously, Mr. Du was also discouraged by the "700,000 yuan a needle" of Northina. After learning the news of The "insurance" of Nocina's sodium from the patient organization Mei'er SMA Care Center, Mr. Du rekindled the hope of life. He recalled that many patients in the patient organization cried at that time, including many parents of the children. "After entering the insurance, counting the medical insurance reimbursement, although it is not clear how much to pay out of pocket, it will certainly be able to afford it."
Doctors give injections to patients
"I can use this medicine on the first day of the new year, and I feel lucky enough to explode!" Mr. Du is full of hope for the future, "I hope that I can recover my health in the future, go to work normally, live a normal life, and hope that more patients, especially children, can recover their health." ”
For the first time, high-value rare disease drugs have been included in the medical insurance drug list, which highlights the government's great importance to the drug protection of rare disease patient groups. Xing Huanping, executive director of Mei'er SMA Care Center, said: "We have witnessed the patient group from no drug available, to the hope of treatment, to today's medical insurance policy, and the family burden has been greatly reduced. This is the best New Year's gift that SMA patients and families across the country have ever received. ”
It is understood that since January 1, Guangdong has included all negotiated drugs and their generic names during the agreement period in the scope of "dual channel" management drugs; for the 67 newly negotiated drugs including noncinacon sodium, to ensure that at least 1 designated medical institution or designated retail pharmacy in each prefecture and city is supplied and can be reimbursed normally.
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