Dazhong.com·Poster reporter Zhang Fangheze reported
“Thanks to the party and the government for their good medical insurance policies, and thanks to the superb skills of the medical staff, so that we can afford to see a doctor and see There is hope.” Recently, the father of a spinal muscular atrophy (SMA) child in Heze Municipal Hospital said emotionally. Since January this year, the national negotiated drug drug Nosinagen Sodium Injection, which was reduced from 700,000 yuan to 33,000 yuan, landed in Heze. At present, 13 patients in the city have enjoyed policy dividends, which has greatly reduced the economic burden of families. Light up the light of life for children.
It is understood that spinal muscular atrophy (SMA) is a rare disease that causes muscle weakness and atrophy. Patients with this disease generally begin to degenerate muscle function around 8 months after birth, gradually unable to sit, lie and walk independently, and become more and more serious, and eventually die due to breathing difficulties. However, the precise targeted therapy drug for this rare disease, Nosinagen Sodium Injection, costs as much as 700,000 yuan per injection, and the high price is daunting for the patient’s family.
“Thanks to the country for not giving up any small group, and to the medical insurance department for allowing us to use lower-priced drugs, so that we can see the hope of life, and I no longer have to watch my child die!” On March 17th, in Heze Municipal Hospital, the reporter met Mr. Yan, a family member of a patient with SMA. When he talked about the price reduction of sky-high drugs into medical insurance, the 36-year-old father was emotional and wept several times.
SMA is extremely scary and extremely rare, but unfortunately, both Mr. Yan’s son and daughter suffer from the disease. “My daughter discovered behavioral abnormalities when she was about 8 months old and was later diagnosed. Previously, there was no specific drug for SMA, and we could only rely on traditional rehabilitation treatment to slow down and prolong the onset time, but in the end it would still occur. Loss of function.” Mr. Yan said.
In 2019, Nosinasena Sodium Injection was approved for marketing in China, but a 5 ml of Nosinasena is priced at nearly 700,000 yuan per needle. Patients need multiple injections every year, and the drug is lifelong. , which is still an astronomical figure for the average household. “Several millions of dollars a year, even if I sell iron, I can’t afford it. Every day I see my child’s function degenerate, from not being able to walk, sitting, to not even picking up an apple. Being a father, I feel uncomfortable and guilty. Ah, I feel like the two children will leave me at any time.” Recalling the medical treatment process, Mr. Yan choked for a while.
It wasn’t until the moment when they learned that Nosinagen sodium was included in the drug list, SMA patients’ families had renewed hope . “At that time, our patient group was like the Chinese New Year. Every parent was so excited that they wept. Especially during the ‘National Talk’, the staff said that every small group should not be given up, and tears filled their eyes.” Yan said excitedly.
Nosinagen Sodium Injection has been significantly reduced in price and included in medical insurance. It will be officially implemented from January 1, 2022. When can Heze patients use the reduced-price drug? This concerns all patient families.
“We attach great importance to the work of national talks on drug implementation, maintain drug catalog information as soon as possible, coordinate drug supply to Heze, and ensure patients’ medication needs.” said the relevant person in charge of the Medical Service Management Section of the Municipal Medical Insurance Bureau.
Under the coordinated efforts of the medical insurance department, the targeted drug after the price reduction was launched in our city. In early January 2022, the first spinal muscular atrophy targeted drug (nosinagen sodium) was injected in Heze City Completed in the Children’s Neurological Rehabilitation Ward of Heze Municipal Hospital.
“As a pediatrician, I deeply understand the dilemma and urgency faced by the families of SMA patients. Before the policy was implemented, we conducted strict injection training and learning. After being included in the medical insurance, our first Time to contact the family members who are waiting for treatment.” Liu Jinfeng, director of the Pediatrics Department of Heze Municipal Hospital, said that with the assistance of the medical department, the pharmacy department, and the medical insurance department, Liu Jinfeng’s team cooperated with the anesthesiology department and the imaging department to consult and formulate a plan, and successfully completed the intrathecal injection. .
“On March 16, the two children received the third injection. After evaluation, the body has been significantly improved. The daughter no longer has obvious tremors when holding the pen. Although it is a small improvement, Let us see hope.” Mr. Yan said.
It is understood that another seven high-value rare disease drugs have been included in the medical insurance drug list this year, demonstrating the country’s high priority on drug protection for rare disease patients. Now, with the implementation of the 2021 National Medical Insurance Drug Catalogue, under the current medical insurance policy of Heze City, after multiple reimbursements such as “basic medical insurance + serious illness insurance”, the treatment cost of spinal muscular atrophy (SMA) has increased from several million yuan per year. It was reduced to more than 100,000 yuan, and the personal burden was tens of thousands of yuan, which rekindled new hope for the patient’s family.