"I don't know what to say, I really thank the country for its good policies." On January 7, Ms. Zou's 5-year-old and 4-month-old daughter Duoduo (pseudonym) finally received a "life-saving needle" of Nosinasson sodium, which is used to treat spinal muscular atrophy (SMA). This is the first child in Yunnan to use the high-priced drug Nocinachon sodium in the past after it entered the medical insurance directory.
Ms. Zou introduced that Duo Duo was born in 2016. But unexpectedly, the family soon discovered that the 5-month-old Duo duo could not dance like other children, and then went to several hospitals until Duo Duo was diagnosed with spinal muscular atrophy at a hospital in Beijing. The originally happy family has lost the laughter of the past.
Doctors at the time told Ms. Zou that the disease was a rare disease and that there were no drugs to treat it. "The doctor told us to carry it home, and the child could live for as long as possible."
But Ms. Zou did not give up, and while insisting on doing physical rehabilitation for her daughter, she actively inquired whether there were drugs that could treat such diseases.
Until 2019, the world's first spinal muscular atrophy treatment drug, Nocinasin sodium injection, was approved for marketing in China, which gave Ms. Zou hope.
But the initial price of a shot of Nocinacine sodium was close to 700,000 yuan, even after adding subsidies from the aid program, the cost of medicines for one year was not something that an ordinary family like Ms. Zou could afford. Faced with high drug costs, Ms. Zou's family was powerless.
With the official landing of the new version of the "National Basic Medical Insurance, Work Injury Insurance and Maternity Insurance Drug Catalogue" on January 1, 2022, the "sky-high special drug" Nocinasin sodium injection, which was once close to 700,000 yuan a shot, entered the new version of the medical insurance catalog, and the price plummeted to 33180 yuan, igniting new hope for SMA rare disease patients.
Zhao Yin, deputy director of the Pharmacy Department of the First People's Hospital of Yunnan Province, said that after learning that Nocinasin sodium injection was included in medical insurance, the hospital attached great importance to promoting the landing of negotiated drugs as an important part of "doing practical things for the masses", and timely included negotiated drugs in the hospital drug supply directory. Through the cooperation of the Pharmacy Department of the Hospital, the Drug Procurement Management Office, the Medical Insurance Office and the drug distributors, we will ensure that the drugs "should be fully matched" in the negotiation and protect the benefits of insured patients.
Tang Chunhui, director of the Department of Pediatrics of the First People's Hospital of Yunnan Province, introduced that SMA patients will have developmental disabilities from birth, can not turn over, can not stand, can not sit, can not walk, if serious may die within one year of age. If you can survive, you can only lie in bed, and then there will be a series of functional disorders, such as spinal deformation scoliosis, which is a great threat to the health and life of children.
He said that as the first patient in our province to be treated after The Nasina sodium entered the medical insurance, the child got sick unfortunately, but fortunately, due to the good policies of the state, the burden on the family can be reduced to the greatest extent and bring more hope to similar patients.
Yunnan network reporter Peng Xi photo report