On January 27, Ms. Du, 34, finally branded Northinacana, a special drug for the treatment of the rare disease spinal muscular atrophy (SMA). This is the third adult patient in Yunnan Province to use the "sky-high drug" after it was included in the medical insurance catalog.
Ms. Du's mother introduced that when her daughter was 10 months old, she took her hand and could go everywhere. But when she was about one year old, she noticed that the child often walked and fell, "We sensed that something was wrong, so we took the child to the doctor." It was eventually identified as spinal muscular atrophy. ”
Over the years, she and her husband have been taking their children everywhere to see a doctor, Guangzhou, Beijing, Tianjin and other places have run all over, "we have a glimmer of hope to go to various hospitals, find various doctors to see, but there has been no way."
Ms. Du said that when she was ten years old, she completely lost the ability to walk, and when she was 17 years old, she was diagnosed with SMA in Guangzhou, and there was no way to treat it at home and abroad, until five years ago, When Northina was listed, but the price at that time was about 700,000, "it could not be cured at all." "This year, Nosinasana was included in medicament, and I see hope and I am particularly grateful, because the country has not given up on our rare disease group."
The doctor injected Ms. Du with the specific drug Nocinasana.
Nosina sana.
Meng Qiang, chief physician of the Department of Neurology of the First People's Hospital of Yunnan Province, introduced that Ms. Du belongs to the SMAII type, which usually occurs in 6-18 months, can sit alone, but walking is limited, the disease gradually progresses, and finally needs to move with the help of a wheelchair. "Previously, the two SMA patients we treated had better spinal conditions and clinically belonged to SMA type III. Ms. Du is older, the degree of curvature of the spine is relatively large, and the treatment is more difficult. ”
Meng Qiang also said that SMA patients need lifelong injections of Northinacna for treatment. "When the patient is injected for the first time, the first injection is completed after the lumbar puncture on day 0, the second injection after 14 days, the third injection after 28 days, the fourth injection after 63 days, after four injections, the drug in the body is quickly reached to a loading dose, so that the motor neurons of spinal cord degeneration are placed at a higher concentration of drugs, thereby preventing motor neuron degeneration, after which the patient needs to be injected every 4 months."
"Preliminary studies confirm that Northinacana is effective and safe for smas." Meng Qiang hopes that the sick population will not give up drug treatment, from the original 700,000 sky-high drugs, to now more than 30,000 injections, it can be found that the national medical insurance is also trying to ensure that these patient families can "afford", as soon as possible to receive treatment can let patients have more hope for life and better quality of life.
Ms. Du's mother also said that now her daughter's basic life skills such as wearing clothes and going to the bathroom need outside help, "I hope that through treatment, her body can be improved, if she can achieve self-care for herself."
Yunnan network reporter Peng Xi intern Zhang Ruonan photo report