People's Daily health client reporter Kong Tianjiao
"We are very excited after hearing this news, the state has helped to solve the problem of children's medication, but at the same time we hope that the medicine can be faster and faster, because many families have begun to cut off the drug since last year, and now there is only a small amount of medicine left without the drug."
Within two days after the National Health Commission issued the "Temporary Import Work Plan for Chlorappa", many families of children from Guangzhou, Guangdong, Zhengzhou, Henan and other children contacted the People's Daily health client reporter to talk about their urgent needs.
Children who are taking medication, courtesy of the interviewee.
On April 1, "Song Song Dad" in Guangzhou, Guangdong Province, told the People's Daily health client reporter: "I am a family member of a child with rare epilepsy, after seeing the temporary import work plan of Chlorpachan, I laughed out loud with excitement, and I am very happy that the country has finally begun to pay attention to our rare disease group and help us solve the problem of medication." However, I also have some concerns, at present, a large number of children who have taken clobats have been discontinued, and many children have serious consequences such as recurrence of epilepsy and aggravation of seizures. More than half a year has passed since the cessation of the drug in July last year, and even families who still have medicine are saving on medication. ”
In 2011, the U.S. Food and Drug Administration approved the listing of clopazan tablets and clobasan oral suspensions. The drug was first approved for marketing in Australia on February 6, 1970, and has been approved for marketing in more than 100 countries and regions. Since the 1980s, clopajan has been used as an anti-epileptic drug in more than 100 countries.
Previously, many children with rare diseases have released rare disease information, such as infantile spasms, Dravet syndrome, LGS syndrome, tuberous sclerosis, infantile epilepsy accompanied by wandering focal seizures (EIMFS) and other rare epileptic encephalopathy. All of these children need to take a drug called clobarzan. According to the Catalogue of Psychotropic Substances (2013 Edition), clopas is a second-class psychotropic drug in mainland China and has not been approved for marketing and sale in China. The family members of the child can only purchase chlorpazam from abroad.
A family member of a child in Zhengzhou, Henan Province, also told the People's Daily health client reporter: "Excited to tears, our children need this drug very much, do not take this medicine, the child's symptoms will be aggravated, we do not want to give up this opportunity, this import hopes to really solve our drug crisis." ”
In order to meet the urgent need for clinical medication of chlorposa, the National Health Commission proposed in the plan a list of 50 medical institutions that intend to lead the import and use of chlorpramita, selected the medical institutions that lead the import, organized the formulation of drug use specifications and prescription qualification requirements, and in terms of drug use management, monitored and recorded the clinical diagnosis and treatment records related to the use of temporary imported drugs and the information and data of drug safety, effectiveness, price, compliance, adverse reactions, etc., and should be kept for a long time. The deadline for comments on the work programme is April 28 this year.
"Song Song Pa" hopes that the temporary import work plan of Chlorpaljan can be completed as soon as possible, so that the drug can be used in the hands of patients as soon as possible.
