In the past half a month, Li Fang's (pseudonym) mood has fluctuated.
On March 29, the National Health Commission issued the "Work Plan for the Temporary Import of Urgently Needed Drugs for Clinical Practice" and the "Work Plan for the Temporary Import of Chlorpaljan", soliciting public opinions and announcing the list of 50 medical institutions that intend to lead the import and use of Chlorpachan.
This means that children with EMFS, including Li Fang's children, are expected to use clopazan through legal channels.
Just nine days ago, Li Fang received materials from the procuratorate of Zhongmu County, Henan Province, rejecting the complaint — last year, Li Fang was accused of "smuggling, transporting, and trafficking drugs" for receiving and forwarding to patients, and the families of three other children were investigated by the police. Since then, the prosecution has decided not to prosecute, taking into account that they "induced crimes for the treatment of their children" and "did not profit."
Zhongmu County People's Procuratorate's decision not to prosecute Li Fang.
EIMFS is a rare form of epilepsy first discovered by Italian scholar Copola in 1995 and manifests as a migratory focal seizure that causes infants to lag behind in their intellectual and motor development. Currently, EIMFS is primarily symptomatic. Clopajan, which is suitable for anxiety disorders and refractory epilepsy, belongs to the second class of psychotropic drugs regulated by the state in the mainland and has not yet been approved for marketing.
In Li Fang's view, the purchase of chlobar is to save her son's life, the acceptance of the transfer of chlobarzaan is to allow other children with epilepsy to take medicine, she is doing her part as a mother, should not constitute a drug-related crime. In November last year, after receiving the decision not to prosecute, Li Fang filed a complaint, and three other family members signed the decision to plead guilty.
Li Fang was sued at the same time as li fang, including the netizen "Iron Horse Glacier" who asked her to forward Chloramasan, who had previously purchased drugs for the families of children with EMFS. On March 18, the first instance trial of the "'Iron Horse Glacier' Drug Smuggling and Trafficking Case" was held at the Zhongmu County People's Court, but no verdict was pronounced at the court.
In 2017, the Notice of the Office of the National Narcotics Control Commission on the Issuance of the Schedule of Dependence of Controlled Varieties of Narcotic Drugs and Psychotropic Substances in 100 Countries stated that 1 gram of chlorpal is equivalent to 0.1 mg of heroin. However, the Minutes of the National Court Talks on the Trial of Drug Crimes issued by the SPC in 2015 held that the trafficking of controlled refined narcotic drugs for medical purposes is not convicted of drug-related crimes.
In the storm, children with EIMFS are in a drug crisis. Li Fang said that by borrowing medicines and purchasing from patients, she has survived until now. The announcement of the National Health Commission gave her hope.
In January 2020, 34-year-old Li Fang gave birth to her son Long Long in Zhengzhou. On the 9th day of his birth, his hands and feet trembled inexplicably, and the corners of his mouth often had spit. At 25 days old, he was diagnosed with infantile epilepsy and at 3 months of age, he was diagnosed with EMMFS.
Li Fang said that at first she hoped that the child could be cured; later she hoped that he would grow up a little, can run, jump, laugh, communicate... Experience human feelings; and then later, I hope that he can live, and there is hope in life. Sometimes she felt that it was a habit, an instinct.
[The following is the dialogue between the surging news reporter and Li Fang]
Drugs and "drugs"
The Paper: When was the first time I heard about Chlobarcan?
Li Fang: After the child fell ill, the doctor prescribed us chlorpachan, let us try it, said that the effect is not bad, that is, eating more phlegm may be more. The doctor also told us that domestic pharmacies and hospitals can't buy this medicine, so let's go to the patient group and ask to see whose children are eating, and ask how they bought it.
Diagnosis and medication instructions for dragon dragons.
The Paper: In which case do you need to use this drug?
Li Fang: I am not very clear, in general, children who take this medicine are more seriously ill with epilepsy.
The Paper: What is the effect of the child after taking this medicine?
Li Fang: In the beginning, the child has been status epilepticus. Taking a lot of anti-epileptic drugs, none of them worked, and after using chlorpachan, it was amazing that the seizures continued to be controlled. I fed him once a day in the morning and evening, initially eating 1.25 mg at a time; as I gained weight, the dose now increased to 7.5 mg each time. Clopajon is generally a combination of drugs, taken with several other drugs, and he has been eating it for more than a year.
The Paper: Are there any side effects?
Li Fang: All epilepsy drugs have side effects, and we want to control the seizures first, because status epilepticus is life-threatening, and we want him to live well.
The Paper: When did you know that clopajan is a nationally banned drug?
Li Fang: In September last year, when the police came to me, they told me that clopazan was a prohibited drug.
The Paper: As mentioned in the judicial materials, do you know that Chloebazan is a state-controlled psychotropic drug, and have carried out the smuggling behavior of helping others evade customs supervision and illegally accepting inbound and forwarding?
Li Fang: At that time, the police repeatedly asked me if I knew that chlorobazan was a controlled drug before, and I said: Maybe someone in the group mentioned it. In fact, before this incident, I did not have any concept and impression of whether clobats were controlled drugs, I only knew that it was a drug for our children with epilepsy, and I did not know that it had the properties of drugs. I don't have any interest in the "Iron Horse Glacier", if I know that it is a controlled drug, there are risks, it will involve drug crimes, why should I help him receive the transfer of Chloebazan. This incident is a lesson for our patients, because some of our children use more than one psychotropic drug.
The Paper: What do you think of Chloebazhan as both a drug and a "drug"?
Li Fang: In the beginning, from my heart, I couldn't accept that this thing was a drug, because I thought it was a medicine for children. Later, I understood that it has a dual attribute in legal terms, that it is the identity of a drug when used for the treatment of diseases; that it has the attribute of a drug when it is used for illegal purposes. I told my friend that I didn't know about this law before, but after I learned about it and the explanatory provisions that followed it, I felt that when the state made laws, it had both the seriousness of the law and the temperature of the law. Including this time law enforcement agencies, in the process of handling the case, their attitude is very good, which makes me feel very warm. But I don't understand why these clobats are considered attributes of drugs for disease treatment, not illegal use.
Cause "unknown"
The Paper: Will the dragon call mom?
Li Fang: No, this kind of function is more advanced.
The Paper: How is he doing now?
Li Fang: Long Long is now more than two years old, weighs more than forty pounds, can't speak, can't move, can only lie down and eat liquid food... Although status epilepticus was under control, his cognition, language, and movement were not developed, and brain atrophy began to occur at about half the age. He has been crying a lot lately, not sleeping for several days and nights, and then sleeping for several days and nights, and we can't find out why we took him to the hospital. This condition began to occur a year ago, when it appeared for a few days a month, and now it is becoming more and more frequent. One day, I recorded a video of my son crying and sent it to a patient. He said he couldn't imagine how such a small child, who didn't eat, drink, sleep, cry for days and nights, survived. If it was his child, he wouldn't be able to last an hour, and his child also suffered from epilepsy. It is very dangerous to continue like this, suddenly the blood oxygen goes down, he has no breath, his whole body is black and purple, what to do?
The Paper: What to do?
Li Fang: We give him oxygen, and we need to pay attention at any time. I and his dad used to be like rabbits, with red eyes.
The Paper: Who is taking care of the children now?
Li Fang: After the child fell ill, I did not go to work, and I took it with the child's grandparents. The child's father has to go to work and will accompany us when he rests.
The Paper: Where did you buy Clopazan later?
Li Fang: Since November last year, we have sometimes bought from patients, sometimes borrowed from patients, and have been until now. Today (March 29), the National Health Commission announced that it has been introduced, seeing this news, I am in a much better mood, very surprised, it should not be long before the country can buy chlorappa accounted for.
The Paper: How much does it cost to spend on a child's medical expenses every month? Can the family afford it?
Li Fang: Children now mainly take four kinds of medicines, including Klopappa, and it costs about 2,000 yuan to take medicine every month. However, he lay for a long time, his lung function was not good, he was prone to pneumonia, and he was often hospitalized. The child had been doing rehabilitation training before, but last May he stopped in poor health. If you add it all up, you haven't calculated how much it would take. However, it is still bearable for now.
The Surging News: Is the cause of the dragon's disease now found out?
Li Fang: No, epilepsy is only a manifestation of the disease, and the specific cause has not been found out so far. We took him to many hospitals, Henan Provincial Maternal and Child Hospital, Zhengzhou Children's Hospital, Tsinghua University Yuquan Hospital... I also asked a lot of experts online, and they all said that he was a genetic mutation. We did a full exon test, chromosome karyotype analysis, etc., but we couldn't find out which gene was mutated. It may be that medicine is more developed before the cause of the child can be detected.
Li Fang's family's genetic test report.
"Drug Cases"
The Paper: Can you tell us about your "drug-related case"?
Li Fang: In September last year, after I went to the Zhongmu County Public Security Bureau to take notes, they told me that they could go home after signing a bail pending trial, although the charges were longer and scarier. Later, I saw that I was suspected of "smuggling, transporting, and selling drugs", and I was directly confused, very shocked, and asked them how this was a drug crime that my child took. They told me that the drug had the properties of a drug and the properties of a drug.
They have a good attitude and are very good from beginning to end, including when they take notes, they will also ask about the child's situation, and they will care a little about my psychological state. After I returned, I consulted several lawyers, all of whom believed that the case would not be transferred to the procuratorate, because the SPC's "Minutes of the National Court Drug Crime Trial Work Conference" clearly stipulates that when it is used for medical treatment, it is the identity of a drug. I didn't expect to be later identified as a "drug-related crime."
The Paper: How has this incident affected your life?
Li Fang: After this incident, my family understood me very well, but during that time I was very anxious. Because I was identified as a drug-related crime, I was worried that I would not be able to buy this medicine in the future and that my child's condition would worsen. If your child is cut off, status epilepticus may occur, and the most severe may be sudden death. Of course, being involved in a criminal case for no reason also makes me feel very devastated.
The Paper: How many times have you helped Daigou "Iron Horse Glacier" receive packages?
Li Fang: Once, just in June. Because I had bought medicine from him, he knew my specific address and name. I also asked him if there would be any questions, and he said no, if the medicine was stuck at customs, he might need to bring the child's medical record book to bring it back.
The Paper: After this incident, did you communicate with the other three family members?
Li Fang: I communicated with a local mother, but we didn't talk much, and we all avoided this matter at that time. She also did not approve of the charge, but she did not complain. This matter hurt her a lot, her family and the people around her did not understand, thinking that she must have done something bad, the family believed that she should not help the purchasing package. Later, she wanted to buy chlobarabzan for her child again, and her relatives directly said, don't give the child this medicine, this medicine is a drug. We contacted less later and didn't know how it was now.
The Paper: Why do you insist on complaining, the Zhongmu County Procuratorate did not actually prosecute you?
Li Fang: Although the procuratorate did not prosecute us, it believed that we constituted a crime, but the circumstances were minor, and considering that it was for the treatment of the child and other reasons, it made a relative decision not to prosecute. I have always had a knot in my heart that can't be solved, and the child always has to take this medicine, if they think this is a crime, what will the child do after taking this medicine?
In addition, after this matter came out, some people questioned us on the Internet, saying how parents have been using drugs for their children. I felt very painful, so I filed a complaint and wanted a clear result. Later, the "Iron Horse Glacier" case was heard, and I went to the scene and wanted to go to the audit, but I couldn't go in without the witness. After the trial, I met with his lawyer, who introduced the case and made it clear that all the chloobals imported by the "Iron Horse Glacier" were used for medical purposes. So I very much don't understand that the courts have identified the medical use of it (these clobats), why is it still recognized as a drug, and why are we also identified as drug-related crimes?
Some people on the Internet say that they want to "extrajudicial grace", but in fact, it is not "extra-legal grace", we are not to challenge the authority of the law, but the law is so stipulated, it is used for disease treatment is a drug attribute.
A child with EMFS ate an empty pill box. Infographic, image source: Toot Mom
The Paper: After the accident, did the "Iron Horse Glacier" family contact you? What do you think of the daigou "Iron Horse Glacier" case?
Li Fang: After the trial of the "Iron Horse Glacier" case, his wife called me and said that she apologized to me for the "Iron Horse Glacier". I felt like it had happened, there was nothing to apologize for, and he didn't expect it to happen. We were actually a "case", it should be the same crime, at that time there were five of us, and the procuratorate did not prosecute four of our families, only the "Iron Horse Glacier" of purchasing. His children also have epilepsy, and I hope he will come home soon.
The Paper: What happened to your "case" now?
Li Fang: On March 20, I received a notice of rejection of my complaint and prepared to go to the Zhengzhou Municipal Procuratorate to continue my complaint.
Mother's "instinct"
The Paper: Is there a cure for this disease at home and abroad?
Li Fang: At present, there is no cure, and the child has not been diagnosed with the cause, and we can only treat it symptomatically. At one check-up, the doctor thought that my child was glucose transporter 1 deficiency syndrome, the prognosis of this syndrome was very good, at that time we thought there was hope, but later found out that it was not this syndrome. After that, every time we took our son to the hospital, the doctor told us to face reality.
The Paper: When you hear the doctor say this, will you feel very uncomfortable?
Li Fang: At first, it was very difficult to accept, it was very painful... The child has been sick for more than two years, and now his mood is much calmer, but when the doctor says that he is not growing up, I still feel very uncomfortable, and occasionally go to psychological counseling.
The Paper: How many children do you have?
Li Fang: We currently only have this one child.
The Paper: Considering having another child?
Li Fang: Not yet. At present, take this child first, because the cause of the child's illness is unknown, we have various worries, and other things will be considered later.
He can't speak, and he can't express his discomfort. At first, we hoped to find a cure for him; later, we wanted him to grow up, to run, to jump, to laugh, to communicate... Experience people's feelings, feel people's bits and pieces; and then later, we hope that he can live, can live on the line, live to have hope, in order to find the cause, maybe one day medicine broke through this bottleneck. But sometimes it feels like it's just a habit, an instinct, and you have to stick with it.
The Paper: It feels too hard.
Li Fang: I once chatted with a doctor, who said that the cause of our child's illness has not been found for so long, and it is likely to be the first case in China or the first case in the world. However, in fact, it is not as difficult and painful as others think, because the child's face is very cute. Then, our family went out to play and would be happy, and my husband hurt his son very much.
The Paper: If there is research on this disease, would you like him to try it?
Li Fang: My child can accept anything, even if it is the method of scientific research and the method of experiment.
(At the request of the interviewer, Li Fang and Long Long are pseudonyms)