At 10:00 a.m. on New Year's Day this year, 3-year-old Rui Rui and his mother walked into the doctor's office of Wuhan Children's Hospital, and 5 ml of Nosinasin sodium injection flowed into Rui Rui's body along the needle, and the mobile phone next to rui rui's favorite cartoon was placed, and the well-behaved Rui Rui did not cry.
This is the long-awaited picture of the families of all SMA (spinal muscular dystrophy) patients.
As an SMA targeted therapy drug, Northinacana Injection was officially included in the national medical insurance drug list on December 3 last year and will be implemented from January 1 this year. On New Year's Day, nearly 20 SMA patients were treated in Guangdong, Beijing, Shanghai, Hubei, Shandong and other places.
↑ Infographic. On January 1, 2022, a 4-year-old boy in Zaozhuang, Shandong Province, received the first injection in china after the spinal muscular atrophy (SMA) targeted drug was included in medical insurance.
As a family member of the first batch of SMA drug patients "after admission to insurance", Rui Rui's mother from Wuhan, Hubei Province, said that after the first injection, in order to prevent the drug from flowing out, Rui Rui lay flat for 4 to 6 hours, and after a week, Rui Rui wanted to receive a second injection, the first year needed to be vaccinated with 6 injections, and then 3 injections per year.
"One shot of more than 30,000, coupled with follow-up medical insurance reimbursement, can afford it, and the child has been saved."
After the child is two years old, he walks "duck steps" and often wrestles
Red Star News: Is the medical procedure for Rui Rui to go to the hospital for injection smooth?
Rui Rui Mom: Like the normal medical procedure, we first went to Wuhan Children's Hospital to register and was hospitalized three days in advance, that is, on December 30, 2021, we were hospitalized. After that, various physical examinations were done, such as blood, liver, kidney, CT to check whether the legs were atrophied and whether the spine was curved, which was to be evaluated before the injection. Rui Rui is relatively good in all aspects of his body, and there is no scoliosis, so he was vaccinated as the first Hubei child on New Year's Day, and other children were vaccinated in the next few days.
Red Star News: What was the status of the day that Rui Rui received the injection?
Rui Rui's mother: Rui Rui was quite brave that day, and her state was relatively good. I accompanied Rui Rui into the doctor's office at 10 o'clock in the morning, and half an hour later, the whole injection process was over. Listen to the doctor, this injection for neurology is a more conventional operation, the doctor first gave Rui Rui a local anesthetic, a relatively thick needle tube from the waist into it, the child will definitely move will cry, I put Rui Rui's favorite cartoon "Car Fairy Tale" on the side of the phone to coax him, distracted, he will slowly get better, the drug is pushed when he did not make trouble, and finally pulled out the needle when he cried, after the end of the injection, I carried him back to the inpatient ward, the doctor said that Rui Rui should lie face up for 4 to 6 hours, I was also showing Rui Rui TV, and he was still quite well-behaved.
Red Star News: Is the time span from diagnosis to medication long?
Rui Rui's mother: It is also a blessing in disguise, we did not wait so long. Rui Rui is now 3 years old and 3 months, he was diagnosed in October 2021, to January 1 this year to receive injections, waiting for more than two months in between, but in fact, we were misdiagnosed for a year, before hanging orthopedics has not been able to find out the cause, and then went to Wuhan Children's Hospital to do genetic testing to know that it was this disease, at that time felt very desperate, but Rui Rui is sMA-III patients, that is, mild, compared with other severe children the situation is good.
Note: According to the age of onset and clinical course, SMA is divided into 4 types from heavy to light, of which:
Type I is onset within 6 months of birth, maximum motor capacity can not reach sitting alone, most children die of respiratory failure within 2 years of age;
Patients with type II mostly begin to develop diseases in 6 to 18 months after birth, progress slower than type I, and the maximum motor ability can reach sitting alone, but the age of sitting alone may lag behind normal children of the same age, can not stand alone or walk alone, and most can live to adulthood;
Patients of type III mostly develop illness after 18 months of birth, have normal motor development in the early stage, can walk alone, and eventually lose the ability to walk alone, and spend the rest of their lives in a wheelchair;
Patients with type IV are more likely to develop the disease after adulthood, and life expectancy is not shortened.
↑SMA is an autosomal recessive genetic disorder in which the parents of the child are usually carriers.
Red Star News: When did you notice The "abnormality" of Rui Rui?
Rui Rui's mother: Rui Rui's development before the age of two is the same as that of a normal child, he can walk independently at 13 months, and his legs are particularly strong and strong at that time. He only began to develop slowly after he was two years old, and he always felt tired when he walked, but at that time he did not have symptoms of weakness. Later, every time he squatted down and got up again, his hands had to support the floor, and the other children just squatted down and got up, and I felt abnormal.
Slowly he will not jump, is the feet off the ground to jump up, walking began to "duck step", waist and ass twisted particularly badly, often wrestling, normal children when two or three years old can not be like this, should be more and more stable, I am worried that there is a bone problem, I have been taking him to various hospitals for treatment.
Red Star News: Did Rui Rui find out that he was sick?
Rui Rui's mother: He just asked me, "Mom, why doesn't my leg have strength, why can other children jump and jump, I can't jump up?" I said to him, "It's the legs that are sick, everybody is sick, every kid is going to get an injection, and we're going to have a shot to replenish our energy." ”
I have used the mentality of "gambling" to be included in medical insurance
Red Star News: How do you feel when you learn that your child has been diagnosed?
Rui Rui's mother: After I knew it at that time, I was so desperate that I felt that the sky had collapsed, and I felt that I had no courage to live, how could a good child suddenly find out a disease that we didn't know at all? And we don't have any family genetic history, and finally my father and I checked and found that the two of us were carriers, resulting in a 1/4 probability of our children getting sick, and I blamed myself.
↑ Nosinasin sodium injection.
Red Star News: What are you and Rui Rui's father planning after the diagnosis?
Rui Rui's mother: The doctor suggested that we go home for rehabilitation treatment, he said that there are currently medicines, we learned that through the foundation (Note: the first domestic public welfare organization to pay attention to rare diseaseSMA "Beijing Mei'er Spinal Muscular Atrophy Care Center"),there is an application, 550,000 injections, a shot to send 5 injections, a year needs 6 injections, the next year to continue. Good family conditions can play a dozen, our economic conditions are unaffordable, we want to make two-handed preparations, at that time also heard that the medical insurance bureau is going to meet and negotiate, to be honest we have a "gamble" mentality, if it is really included in medical insurance, the child can afford to use medicine, if not, we will sell the house, first give the child an injection.
Red Star News: When did you learn that Nocinasine Sodium Injection was included in Medicare?
Rui Rui Mother: On the morning of December 3, 2021, the news reprinted in our patient group was very happy and excited, especially the children who were diagnosed earlier than our family Rui Rui, those who waited for several years, they were more difficult than us. Now it is good to be included in medical insurance, more than 30,000 injections, coupled with follow-up medical insurance reimbursement, can afford it, and the child has been saved.
Red Star News: What is the next treatment schedule for Rui Rui?
Rui Rui's mother: After another week, Rui Rui will receive a second dose, 6 injections in the first year, and 3 injections per year thereafter. In fact, there is also a little worry about the child's recovery, may need to be hit to the third injection will have obvious effects, after all, this drug has only been on the market for a few years, clinical data is also very small, do not know how much effect it has, but now only this drug can be used in China, but also can afford to use, so will insist on giving the child injections, in addition to some rehabilitation treatment, I hope that the child can recover faster.
Red Star News reporter Danni Rodney
Edited by Zhang Xun
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