Xiao Yu (pseudonym), who was in his infancy, was discharged from the hospital. This time, the flicker in mom's eyes was no longer tears of despair, but a glimmer of hope.
Xiaoyu is only two months old, but unfortunately suffers from spinal muscular atrophy (SMA). Four days ago, he injected the first dose of nocinnasine sodium at the People's Hospital of Ningxia Hui Autonomous Region and ushered in a new life.
Spinal muscular atrophy is a rare disease of the hereditary neuromuscular disorder class. The incidence of the disease in newborns in China is about 1 in 6000 to 10000.
On November 7, 2021, two hours after Xiaoyu was born, Xiaoyu's mother found an abnormality, and the child's limbs could not move. Subsequently, the doctor gave Xiaoyu a full examination, but all the results were not unusual. "The hospital advised his dad and I to send my and the child's blood to the genetics department for testing, and after two tests, he was diagnosed with the congenital rare disease SMA." Xiaoyu's mother said.
Because the child is too small and the treatment cost is expensive, after the diagnosis, the hospital recommends that Xiaoyu's parents take the child home first. Xiaoyu's mother was shrouded in despair, but she was still unwilling to give up this young life. She collected treatment information from many sources and also met some parents of SMA children in Ningxia on the Internet.
"There is a kind of drug in foreign countries that is said to be cured with a needle, but the price exceeds tens of millions, and the imported drug Nocina raw sodium is also hundreds of thousands of dollars, and we simply can't afford it." Xiaoyu's mother said.
Doctors at the Ningxia Hui Autonomous Region People's Hospital are injecting Xiaoyu with sodium nocinazine. Courtesy of respondents
Northinalsan sodium injection is the first imported drug approved for the treatment of spinal muscular atrophy in mainland China, which was launched in 2019, with a relatively high price and long-term injection.
On December 3, 2021, the National Medical Security Bureau announced the results of the adjustment of the latest version of the national medical insurance drug list, and Nocinasin sodium injection entered the medical insurance drug directory, and the cost was reduced from nearly 700,000 yuan / needle to 33,000 yuan / needle, which was implemented from January 1, 2022.
Xiaoyu's parents heard the good news from Bian Guangbo, director of the Department of Pediatric Neurology at the Ningxia Hui Autonomous Region People's Hospital.
On January 19, 2022, Xiaoyu bone marrow puncture injection of nocinnassant sodium was successful, becoming the first beneficiary child in Ningxia. He will also inject the drug again on days 14, 28, and 63, and every four months thereafter.
Bian Guangbo said that in the future, children will also receive rehabilitation training including swallowing, language, cognition and other aspects.
"Medicare negotiations have improved access to drugs for rare diseases, and after Medicare reimbursement, each dose of sodium Gnosinacin costs about 10,000 yuan, bringing hope for survival and quality of life improvement for many children who could not survive or struggled to survive for a period of time in a state of disability." He said.
Xiaoyu's mother held the child's hand. Photo by Yang Qin
Dr. Kang Yuqi in Xiaoyu's treatment team said that because of the high price of genetic testing and the limited public awareness of the disease, many SMA patients were not diagnosed at the first time, delaying the disease. "Xiaoyu's mother was amazing! She is one of the few parents who can withstand pressure and persevere to the end. She said.
The winter sun outside the window is warm, and the Lunar Year of the Tiger is approaching. After injecting the drug, Xiaoyu's upper limbs have been able to move slightly. Referring to every turnaround, Xiaoyu's mother would sigh that Xiaoyu was so lucky, as if everything was to make him live better.
"Now the whole family is full of confidence, and we will do our best to ensure his follow-up treatment." Xiaoyu's mother said. (Ai Fumei, Yang Qin)
Source: Xinhua News Agency