"Before this medicine was too far away for us, like looking at the stars in the sky, now we finally see hope." At about 7 a.m. on the 1st, a 4-year-old child with spinal muscular atrophy (SMA) in Zaozhuang City, Shandong Province, successfully injected the targeted therapeutic drug Nocinasson sodium, and the patient's mother cried with joy.
The nurse of Zaozhuang Maternal and Child Health Hospital showed reporters the sodium injection of Northinal. (Photo by Shao Luwen, Xinhua News Agency)
Spinal muscular atrophy is a rare disease of hereditary neuromuscular diseases, with an incidence of about 1/6000 to 1/10,000 in newborns in China, and there are currently more than 30,000 patients. Zhao Yuying, director of the Department of Neurology genetic metabolic diseases and rare diseases at Qilu Hospital of Shandong University, said that Nocinasin sodium injection is China's first imported drug approved for the treatment of spinal muscular atrophy. When entering the Chinese market in 2019, the price per needle was nearly 700,000 yuan, and its expensive price was unbearable for the patient's family.
On December 3, 2021, the National Medical Insurance Bureau announced 74 new drugs into medical insurance, and the widely concerned "sky-high life-saving drug" Nocinacine sodium injection was listed among them. After 8 rounds of negotiations, the drug entered the new version of the medical insurance drug catalog at a "floor price" of 33,000 yuan per needle, which made many patients see hope.
Doctors at Zaozhuang Maternal and Child Health Hospital prepare to inject drugs. (Photo by Xinhua news agency reporter Guo Xulei)
Chen Qin, director of the Zaozhuang Shizhong District Medical Insurance Bureau, said that after the release of the new version of the national medical insurance drug catalog, the medical insurance department checked the patients in the jurisdiction for the first time and contacted the patients' families. After determining the patient's medication needs, after repeated communication with pharmaceutical companies, it was finally ensured that the children could receive medication treatment at the first time.
"On December 4, I received a call from the health insurance department, and our two sons grasped the life-saving straw, and the children caught up with the good policies." The patient's mother said that the day of the release of the new version of the national medical insurance drug list happened to be the child's birthday, which was undoubtedly the best birthday gift for the child.
The child completes the injection of the drug. (Photo by Shao Luwen, Xinhua News Agency)
"The medical insurance department also helped the children to apply for the Zaozhuang City Customized Supplementary Commercial Insurance 'Zaohui Insurance', and the children needed to be injected 6 times in the first year, and 1 injection every 4 months from the second year. Through medical insurance reimbursement, supplementary commercial insurance, medical assistance and other methods, the children's families need to pay about tens of thousands of yuan per year, which greatly reduces the burden on the family. Chen Qin said.
Sun Xiaoqian, director of the Pediatric Intensive Care Department of Zaozhuang Maternal and Child Health Hospital, said that after the child completed the injection, all vital signs were normal. The 4-year-old smiled and said to his parents before the injection: "When the injection is over, I can fly." (Reporters Zhang Zhilong and Shao Luwen)