The sky -high price of 700,000 needles dropped to 33,000!In Jiangsu Lianyungang, a 5 -year -old baby was used in a rare disease!

A few days ago, Kangkang (a pseudonym) with rare diseases in the Pediatric Neurology Ward of the First People's Hospital of Lianyungang City injected a injection -Nosnina sodium. This small bottle is worth a thousand dollars. It is the only imported drug in the world for treating rare diseases of spinal muscle atrophy. The original price of this injection was as high as 700,000 yuan, and it was injected 6 times a year, and the annual cost of 4.2 million yuan. For the Kangkang family born in ordinary families, I dare not think about it. Poor Xiao Kangkang can only endure the invasion of spinal muscle atrophy at a young age. Life is in danger. Parents are embarrassed ...

Desperate: 9 months of big boys suffer from rare diseases, with a one -year treatment fee of 4.2 million yuan

According to Kangkang's mother, her son Kangkang was born in 2017. At the beginning of the birth, Kangkang is still a particularly lively and active baby. He will use his strong legs. Later, Kangkang gradually did not love very much. When Kangkang was 9 months old, she found that she helped her son holding her son It is difficult for him to stand and not sit alone. When he sit, he will be crooked, let alone roll and crawling. The whole person is like paralyzing on the bed.

Comfort Kangkang before injection

She wondered if her son had something wrong with her body, and then took Kangkang to seek medical treatment with her husband, but she could not check what the son had. In 2021, the son was 4 years old, but not only did not improve, but also became more and more serious.

Prepare injections

In July last year, when she and her husband took her son to Beijing Children's Hospital for a genetic examination, she found that Kangkang suffered from a rare disease called SMN2 called SMN2 called spinal muscle atrophy.

They soon learned that the only drug that could treat Kangkang, a rare disease, was Nosina sodium with 700,000 yuan per pin, and 6 stitches a year, 4.2 million yuan per year. It's no doubt that it is sky -high!

Injection of Kangkang Nosina sodium

"Usually I take my child at home. The child’s father has worked on the construction site for many years. The family income is less than 100,000 yuan. In addition to the living expenses and the treatment of Kangkang, there are still little left in the family. Seeing the child early, so I raised money from relatives and friends, and even thought of loans. The cost of helplessness was still so far away. "Kangkang's mother said helplessly.

Although Kangkang's parents wanted to treat them hard, they had not been treated for targeted treatment due to expenses. By 2022, the 5 -year -old Kangkang's physical exercise function has been seriously limited, and thoracic deformities have been combined, and the condition has gradually involved the upper limbs.

Transfer: The sky -high medicine of 700,000 needles dropped to 33,000, and only 11613 yuan per needle was included in the medical insurance.

In 2021, a "soul bargain" was staged in the negotiations of the national medical security drug catalog: Nosnina sodium, after 8 rounds of negotiations by the State Medical Insurance Bureau, "bargaining", the original price of 700,000 needles, Eventually it was reduced to 33,000 "floor prices", the point is that it also included in medical insurance! For Kangkang, it means that life has ushered in a turnaround, and he can finally use his life -saving medicine.

2022 Screenshot of the National Medical Insurance Catalog Drug Negotiation site

After learning that Nosena sodium was included in the medical insurance, Kangkang's parents immediately took Kangkang to the First People's Hospital of Lianyungang City for treatment. The role of drugs.

Nosina sodium injection

Luo Peeliang, an expert in the Department of Pediatrics of the First People's Hospital of Lianyungang City, and the medical insurance department, the rehabilitation department, the orthopedic department, the respiratory, severe department, the radiology department and other departments conducted MDT consultation discussions. Personnel conducted a thorough assessment of the children, and formulated detailed operations and later follow -up plans.

At 10 am on August 30, injection treatment officially started. Kangkang, who was more than 5 years old, was a little scared before the lumbar spine puncture and intrapasure injection, but when the medical staff around him encouraged him to run, jump in the future, or even go to school like other children, Kangkang immediately became very brave.

With the cooperation of all medical staff, Li Hongmei calmly and calmly completed the lumbar spine puncture of the first SMA children in Lianyungang City, and gave Nosnina sodium sheath injection. During the injection process, every step is extremely careful. Because everyone knows how precious each drop of medicine in this little bottle is to be injected into Kangkang's body without leaving.

On September 14th, after the second needle treatment, Kangkang's parents took the medical staff and thanked him in a row, and said excitedly: "In the past few years, I have dreamed of it more than once. Wishes are hope to see him step by step, and now I finally see hope. "

Through this treatment, Kangkang became the first patient with SMA patients who received Nosina sodium injection to disease correction treatment.

In the next treatment, Kangkang will receive 4 treatment within two months, and then every four months of injection, he will be better and better on the road to "stand up". The treatment of SMA patients also marked a new level of precision diagnosis and treatment of rare children's neurology.

Popular science tips -what is SMA?

The full name of SMA is spinal muscle atrophy. This is a rare neuropathy that endangers the systemic system, which may cause death and disability. It is a hidden inheritance of ingredients. Due to the degeneration of the anterior corner of the spinal cord and the extension of the marrow movement, which leads to muscle weakness and muscleAtrophy.It is the "number one genetic disease killer" that leads to the death of infants under the age of two.According to rough statistics, the incidence of SMA is about 1/10000 of surviving newborns. Muscle weakness and muscle atrophy are the most typical symptoms of SMA patients. Based on the age of onset and the maximum exercise function, it is divided into 4 type 4 type 4 type 4 types.The prognosis is also different. Among them, type 1 and type 2 occur within 18 months after birth, accounting for more than 85%of the SMA diseases.

Correspondent Jiang Rong Tang Yan Han Yangzi Evening News / Zi Niu Journalist Zhang Lingfei

Edit: Qin Xiaoyi

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