Rare disease girl injected “sky-high drug” under the care of many expenses reimbursed

2022-04-24 0 By

A needle is as high as 550 thousand yuan of rare disease medication, how many families can bear?Ke Zile, a 16-year-old spinal muscular atrophy patient in Zhangfang Village, Leyuan Township, Ruichang City, faces such a dilemma.Fortunately, under the care and coordination of relevant departments, she finally used the “sky-high” life-saving drugs, and the huge drug costs were reimbursed.Subsequently, the drug was included in the national medical insurance drug list, benefiting all patients with rare diseases like Ke.Ke’s father, Ke Yujie, told reporters that his daughter was born with spinal muscular atrophy, a rare disease characterized by degeneration of motor neurons in the anterior horn of the spinal cord, leading to severe muscle atrophy, weakness and progressive loss of motor function.Until July last year, Ke was barely able to walk with AIDS.Last year, Ke was admitted to a key high school with excellent grades, but his condition suddenly worsened and he could not stand up even with assistance.On July 25 last year, Ke took his daughter to Beijing to seek medical treatment.The doctor said that Nosinasuan sodium injection has a better effect on spinal muscular atrophy, but the price of each injection is as high as 550,000 yuan, and six injections are needed in the first year.The drug is not included in the national list of insured drugs and needs to be used at one’s own expense.”I myself suffer from uremia and have been on dialysis for 12 years. I am unable to work.My wife had to take care of me and our two children, and I couldn’t work. The family of four lived on subsistence benefits.550,000 yuan per needle is astronomical for us!”Ke yu Jie said.When the whole family was in despair, the staff of the Rural revitalization Station of Leyuan Township learned about this situation when carrying out anti-poverty monitoring, and immediately identified the Ke family as a sudden severe hardship, and raised nearly 100,000 yuan for it through a variety of ways.”Illness waits for no one!”Considering the special situation, we immediately communicated with the Ruichang Medical insurance bureau and requested reimbursement of Noxinacan sodium injection according to the medical insurance drug catalog,” Chen Insurance, party secretary of Leyuan Township, told reporters.Last year on September 9, ruichang city health bureau to the leading group for rural revitalization submitted on inputting tent card overcrowded KeZiLe instruct “of the hospitalization expenses, asking wrote:” for NSN that raw sodium injection belongs to the medical insurance directory drugs, cost is higher, in view of this special case, suggested that the municipal government according to the health out for poverty alleviation policy implementation.”On September 13 last year, the relevant departments approved the reimbursement of 90% of the cost of Noxinacan sodium injection for Ke Zela.At the same time, after communication with the leyuan township government, Ke only needs to pay for one injection of medicine, and the other five injections will be donated by the manufacturer.On Dec. 28, Ke was discharged from the hospital.At present, she has received 4 injections of Noxinacan sodium injection, which has a good effect, and is doing rehabilitation training at home.On December 3, the National Medical Insurance Administration held a press conference to announce the adjustment results of the national medical insurance drug list. Seven drugs for rare diseases were included in the list, including Noxinacan sodium injection.This is the first time that a high-value rare disease drug has been included in the list of medicines under the National Medical Insurance since 2016.Upon hearing the news, Ke Yujie hugged his daughter and wept with joy: “Daughter, we are saved!”On January 1 this year, the new version of the National Basic Medical Insurance, industrial injury insurance and maternity insurance drug Catalog was officially launched.Our reporter Cao Chengping stated: Reprint this article is for the purpose of passing more information.If the source is wrong or violated your legitimate rights and interests, please contact the author with proof of ownership, we will promptly correct, delete, thank you.Email address: newmedia@xxcb.cn