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Investigation丨 A "miracle drug" with hundreds of paralyzed patients

author:China News Weekly

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Text/Cow Lotus

The heat of Yanzhao in July is unbearable.

Liang Qiuyu, 54, was lying on his side on the bed, with several pieces of rehabilitation equipment placed messily next to him, making the bed slightly crowded. The sun was scorching the crops outside the house, and the small ceiling fan in the house was creaking and turning, but it didn't feel the slightest coolness.

Liang Qiuyu is a villager in Nandacheng Village, Changtun Township, Wei County, Xingtai City, Hebei Province. At the end of 2020, due to dizziness and tinnitus, she went to the Second Hospital of Hebei Medical University for treatment accompanied by her family. During her hospitalization, she was injected with 30 "cerebrosine carnosine injections" before being paralyzed and eventually diagnosed with Guillain-Barré syndrome (also known as Guillain-Barre syndrome).

"Cerebrosine carnosine injection" belongs to the ganglioside class of drugs. Clinically, such drugs are often used to alleviate the symptoms of Parkinson's disease and acute ischemic stroke, and to improve the repair of nerves after spinal cord injury. However, a senior industry insider told China News Weekly that gangliosides are only auxiliary drugs, "do not exist in the diagnosis and treatment guidelines for any disease, and there is no definite evidence of their efficacy."

It is worth noting that in the past ten years, ganglioside drugs have been widely used in many domestic hospitals and clinics, and have repeatedly appeared on the list of China's drug sales amount, with annual sales once approaching 10 billion, and even being named "miracle drug".

However, behind the halo, the adverse reactions accompanied by gangliosides are frequent, and the efficacy has been questioned by many parties. Liu Zhihui, the leader of the "Gangliosides to Grimbali Rights Defense Mutual Aid Group", told China News Weekly that they were all patients with general paralysis after using ganglioside drugs, "There are currently 130 people, plus nearly 200 people who have previously withdrawn from the group."

According to Xu Chengxiang, head of the "Public Welfare Community for Patients with Guillain-Barré Syndrome", the number of people who suffer from Guillain-Barré syndrome after the use of gangliosides nationwide is at least thousands.

"Whenever I see a new patient entering the group, there will be a nameless fire in my heart." It is not clear why such drugs have not yet withdrawn from the market, leaving so many families experiencing pain. A patient's family member told China Newsweek.

Different patients, similar experiences

More than 9 months ago, Liang Qiuyu was still a land expert, and he took care of 4 acres of land alone. In addition to farming, she is also responsible for transporting her grandchildren to and from school, cooking, and cleaning up the house. Liang Qiuyu's husband, Su Zhongwen, told China News Weekly, "My son and daughter-in-law and I have been working outside for many years, and everything in the family is handled by my wife. ”

Now she could only lie in bed.

Investigation丨 A "miracle drug" with hundreds of paralyzed patients

Liang Qiuyu lay on his side on the bed. Photo: Photo by Zhao Mu

According to Liang Qiuyu and her family, during treatment at the Second Hospital of Hebei Medical University, doctors used "cerebrosine carnosine injection" for her without telling her. Liang Qiuyu's "Daily Expense List for Inpatients" shows that 15 sticks (2 ml each) were used on December 21, 2020, and 5 sticks per day on 22-24 days, for a total of 30 sticks.

On December 31, due to dizziness and tinnitus symptoms improved, Liang Qiuyu had a brief discharge under the advice of doctors. "In fact, at that time, the legs were already inconvenient to walk, and when I was admitted to the hospital before, I could walk on my own, and when I came out, I needed to be supported, and I was weak." According to Liang Qiuyu's recollection, because she was worried about the recurrence of her illness, she did not return to her hometown that night and lived in her brother Liang Qiuchen's Shijiazhuang home.

On January 1, 2021, Liang Qiuyu's limbs were completely unable to exert strength, and he was accompanied by severe chest tightness symptoms, unable to breathe, in a semi-paralyzed state, and was hospitalized again on the same day. On 5 January, he was diagnosed with Guillain-Barré syndrome.

After Liang Qiuyu was diagnosed with Guillain-Barré syndrome, Su Zhongwen doubted at the time whether it would be caused by drugs. So he searched for relevant information on his mobile phone and screened Liang Qiuyu's used drugs one by one until he found that "cerebrosine carnosine injection" may cause paralysis.

According to Su Zhongwen's recollection, he quickly found a doctor to report that the doctor's reply to him at that time was neither certain that it was Guillain-Barré syndrome caused by "cerebrosine carnosine injection" nor negative.

On July 26, a reporter from China News Weekly, together with Liang Qiuyu's family, went to the Medical Office of the Second Hospital of Hebei Medical University to understand the situation, and a staff member in charge of medical disputes in the Medical Affairs Department said how much of a link there was between the use of "cerebrosine carnosine injection" and the patient's diagnosis of Guillain-Barré syndrome, "no one can say (there is a relationship) without identification."

Now, Liang Qiuyu's sudden paralysis has dragged the family into the quagmire.

Su Zhongwen said that from his wife's illness to the present, nearly 200,000 yuan has been spent before and after the treatment fee, of which 110,000 yuan has been paid by himself, which is basically borrowed. "Now my daughter-in-law and I have quit our jobs and gone home to take care of her and her two children, and my son is working outside the home for thousands of yuan a month, which can only maintain the basic life of the whole family, and the treatment fee has not been settled at all."

Liang Qiuyu himself was also very guilty, feeling that it was a drag on the whole family, and his mood had been very low. She told China News Weekly, "Now that I am eating and drinking in bed, I have put so much burden on the children, I can't do anything myself. ”

Liu Sheng, who is hundreds of miles away from Liang Qiuyu and lives in Beijing, has the same experience.

"Every time my father asked me, he suddenly couldn't move, and I didn't know what to say." Liu Sheng's son, Liu Chaoyang, said, "To tell the truth, I was particularly stressed psychologically, and I sent this medicine to my father. But who would harm their parents? ”

The full name of the drug mentioned by Liu Chaoyang is "single sialic acid tetrahexose ganglioside sodium injection" (trade name "Shenjie"), which also belongs to the ganglioside class of drugs.

He told China News Weekly that on the evening of February 10, 2021, his father was sent to the emergency department of a hospital in Beijing because of his sluggishness and unresponsiveness. After treatment, on February 13, my father's sanity was restored, and some simple exchanges could be made. On the same day, the doctor asked Liu Chaoyang to go to a pharmacy outside the west gate of a hospital to buy the drug "Shen Jie".

According to Liu Chaoyang's recollection, at that time, the doctor said that it was to maintain the nerves and was useful for alleviating his father's condition. At that time, he bought a total of 3 boxes of 15 sticks. Later, on February 15 and March 2, the doctor opened three more boxes, and a total of 45 sticks were used before and after.

On February 22, Liu Sheng was discharged from the hospital. At 4 p.m. the next day, Liu Sheng had just finished eating the apple he had cut, and was holding a water cup to drink water, when he suddenly felt numbness on the tip of his hand. He said, "In less than 20 minutes, the whole hand was completely pulled down." ”

Liu Chaoyang recalls that at that time, his father's state of weakness spread very quickly in his body, "initially the fingertips began to numb, then spread to the entire hands, and then to the limbs." At eight or nine o'clock that night, Liu Sheng was unable to stand, and was carried downstairs in a wheelchair by a neighbor and sent to an ambulance.

After a series of examinations at a hospital in Beijing, the doctor thought that it might be potassium deficiency, so he was given infusion and kept in a temporary observation room. In Beijing in February, the weather was cold. But Liu Chaoyang recalled that his father, who was staying in the observation room, was tight-chested and breathless, his face was red, and there were constantly bean-sized drops of sweat.

Unable to wear a mask for a long time, On February 24, Liu Sheng chose to go home accompanied by his family. In the early morning of the next day, Liu Sheng was completely paralyzed in all fours and was again sent to the emergency inpatient department of a hospital in Beijing for treatment.

According to the "course record" provided by Liu Chaoyang, the doctor's round record on March 1 showed that the patient had the possibility of Guillain-Barré syndrome. However, on March 2, the doctor once again prescribed "Shen Jie" to Liu Sheng, and also asked Liu Chaoyang to take the patient's cerebrospinal fluid and blood samples to other hospitals for ganglioside antibody testing. Test results showed positive ganglioside antibodies and were finally determined to have Guillain-Barré syndrome.

Investigation丨 A "miracle drug" with hundreds of paralyzed patients

Ganglion antibody detection part of the content. Photo: Courtesy of Liu Chaoyang

Liu Chaoyang told China News Weekly that the doctors at the testing hospital believe that from this result, it should be a physical reaction caused by a certain drug. However, the explanation given by a hospital in Beijing is that the test report can only confirm Guillain-Barré syndrome, and cannot explain the cause.

In the hospital's view, Liu Sheng is The Gillan-Barré syndrome caused by autoimmunity, and it is impossible to determine whether it is related to gangliosides.

Because his condition has not improved, Liu Sheng was transferred from a Chaoyang Hospital on May 6 and went to an emergency rescue center to continue his recovery.

On July 20, a reporter from China News Weekly visited the pharmacy where Liu Chaoyang bought the medicine. Pharmacy staff revealed in the conversation that "Shenjie" needs a prescription from the hospital to buy, "now you can also buy, more than 300 yuan a box." ”

Increasing cases

What happened to Liang Qiuyu and Liu Sheng is not an isolated case.

An investigation by China News Weekly found that in recent years, it is not uncommon for cases of paralysis after injection of gangliosides and eventually diagnosed with Guillain-Barré syndrome.

Among these patients, the reasons why they first went to the hospital were different, some because of cerebral infarction, some because of dizziness and tinnitus, some because of thyroid nodule surgery, and some even accidentally fell... Although not all patients who use this type of drug will be paralyzed, once guillain-Barré syndrome is diagnosed, it is an irreparable disaster for a family.

Liu Yun is also one of the patients with ganglioside-associated Guillain-Barré syndrome. On April 25, 2019, Liu Yun entered the Fourth Hospital of Hebei Medical University for treatment due to benign thyroid nodules. On April 30, on the day of surgery, 5 "compound asperpeptide injection" and "compound brain peptide ganglioside injection" were infused, and 5 "compound brain peptide ganglioside injection" were infused every day for the next three days. On the second night after being discharged from the hospital, Liu Yun was suddenly paralyzed. On 11 May, he was diagnosed with Guillain-Barré syndrome.

"I never imagined that an ordinary thyroid nodule surgery would cause paralysis all over the body." Liu Yun's husband, Wang Zhanqun, told China Newsweek, "On the day of the operation, the hospital used two drugs of similar ingredients without informing the family, and the dose of 'compound astripeptide injection' reached the maximum amount of one day. ”

Now, two years have passed, Liu Yun can not get rid of the ventilator for a long time due to tracheostomy, complete nursing dependence, eating by feeding, turning over needs help from others, urinating and defecating can not take care of themselves, and has to suck sputum through the airway fistula about 20 times a day. "Human dignity and freedom are gone. This is not life, it can only be considered life. Wang Zhanqun said darkly.

Investigation丨 A "miracle drug" with hundreds of paralyzed patients

Liu Yun is still unable to leave the ventilator. Photo: Photo by Zhao Mu

Investigation丨 A "miracle drug" with hundreds of paralyzed patients
Investigation丨 A "miracle drug" with hundreds of paralyzed patients

In Liu Zhihui's view, for the families of ordinary patients, the cost of treatment for Guillain-Barré syndrome is a heavy burden. He said that there was once a patient who only insisted on treatment for half a month and then went home, "As soon as the ventilator was taken off, basically three or five minutes would not work." To put it bluntly, there is not enough money for treatment, and in the end there is only one outcome that awaits them - death. ”

According to research data, Guillain-Barré syndrome is a multiple neuropathy that mainly damages the spinal nerve roots and peripheral nerves, but can also affect the cranial nerves, resulting in acute demyelinating. Ganglioside-associated Guillain-Barré syndrome is the most severe manifestation type and the pathogenesis is unclear.

Gangliosides were first developed by an Italian pharmaceutical company as a neuroprotective agent whose main indication is Parkinson's disease. Exogenous gangliosides, which are widely used in China at present, are a kind of nerve cell functional substance extracted from pig brain or bovine brain, and its main component is single sialic acid tetrahexose ganglioside sodium.

Relevant literature points out that as early as 1970, gangliosides were widely used in Italy to treat peripheral neuropathy, and the main adverse reactions reported were allergic reactions, fever, sweating and so on. Between 1989 and 1991, 8 cases of Ganglioside-Barré syndrome were reported in Italy. In 1993, Italian scholar Gianluca Landi et al. published an article saying that relevant cases suggested that the use of gangliosides may cause Gillan-Barré syndrome. Previously, doctors in Germany also found that the use of gangliosides caused the occurrence of Gillan-Barré syndrome.

Therefore, as early as the 1990s, gangliosides were "withdrawn" in Europe, and the US Food and Drug Administration has not yet approved ganglioside drugs for marketing in the United States.

A chief physician of the Department of Neurology at a top three hospital told China News Weekly, "After using gangliosides, some patients have been diagnosed with the phenomenon of Guillain-Barré syndrome. His hospital had been concerned about the above phenomenon before 2010, when the neurology department of the hospital explicitly banned the use of this drug, and he would remind young doctors to avoid using this drug as much as possible.

According to the chief physician, "Some patients who use gangliosides have Gillan-Barré syndrome, suggesting a possible causal relationship between the two." ”

Since 2016, the use of gangliosides has also begun to tighten step by step in China.

In November 2016, for possible serious adverse reactions, the former State Food and Drug Administration issued the "Announcement on Amending the Instructions for the Injection of Single Sialic Acid Tetrahexose Ganglioside Sodium Injection (No. 172 [2016])", requiring manufacturers to add the adverse reactions and warning content of the drug involving Guillain-Barré syndrome in the instructions.

On July 1, 2019, the National Health Commission issued a document to list "gangliosides" and "cerebrosine carnosine" in the first batch of national key monitoring and rational drug use drugs. In August of the same year, the Hebei Provincial Health Commission and the Hebei Provincial Administration of Traditional Chinese Medicine jointly issued a document that, in addition to the above two drugs, the "compound brain peptide section glycosides" were included in the key monitoring directory.

In November of the same year, the State Food and Drug Administration issued the "Announcement on Amending the Instructions for Cerebroside Carnosine Injection (No. 91 [2019])" in the warning language: Cases of acute inflammatory demyelinating multiple neuropathy (i.e., Guillain-Barré syndrome) that may be related to the use of ganglioside products were found in the post-marketing monitoring of drugs at home and abroad.

As of 2020, Beijing, Hebei, Shandong, Zhejiang, Chongqing and other places have successively transferred ganglioside drugs out of the medical insurance directory.

However, it is worth noting that from 2016 to the present, the number of ganglioside-related Guillain-Barré syndrome has continued to increase in the past 5 years.

According to the article "Pathogenesis and Diagnosis and Treatment of Geillain-Barré Syndrome associated with exogenous gangliosides" published in the International Journal of Neurosurgery in 2020, the incidence of Guillain-Barré syndrome is usually about 1.6/100,000, but the incidence of Gillan-Barré syndrome increases by 200 times in patients using exogenous gangliosides.

Xu Chengxiang, head of the "Guillain-Barré Syndrome Patient Public Welfare Community", said that according to the above incidence probability, then in every 300 ganglioside drug users, 1 person will have Gillan-Barré syndrome.

He conservatively estimates that patients with Guillain-Barré syndrome due to gangliosides account for more than 5% of the Guillain-Barré syndrome patient population. That is, of the 100 patients with Guillain-Barré syndrome, at least 5 were sick after the use of gangliosides. "At present, after the use of gangliosides nationwide, there are at least thousands of patients with Guillain-Barré syndrome."

So, what is the efficacy of gangliosides?

Multi-billion market size

In November 2019, Bao Xiulan, chief physician of the Department of Pediatrics of Peking Union Medical College Hospital, pointed out in response to questions from parents on Weibo "Bao Xiulan Clinic" that "it is not recommended to use brain nutrition drugs such as gangliosides and murine nerves." There is no evidence-based evidence for evidence-based medicine to prove valid, and it is not used internationally. Scientific research has proved that brain nutrition drugs such as gangliosides and murine nerves are ineffective because they cannot pass through the meninges and cannot enter the brain. ”

Investigation丨 A "miracle drug" with hundreds of paralyzed patients

Source: "Bao Xiulan Clinic" official Weibo

Mao Zhiqi, chief physician of the Department of Neurosurgery at the General Hospital of the People's Liberation Army of Chinese (301 Hospital), has publicly pointed out in the video that although animal experiments have shown that gangliosides can assist in nerve regeneration, thus helping some recovery. However, the results of clinical trials in humans do not support the conclusion that "ganglioside injection is effective in the treatment of Parkinson's disease".

It is worth noting that ganglioside drugs are mainly circulated through hospitals. So, after the state has repeatedly revised the instructions, why do hospitals still prescribe drugs with unclear efficacy and high-risk adverse reactions to patients?

An industry insider, who did not want to be named, told China News Weekly, "Some doctors are habitually administered drugs and do not know that such drugs have serious side effects; some may have interests, after all, drug rebates are still objective facts in many parts of the country." ”

The industry insider said that if the ganglioside-related Gillan-Barré syndrome case occurred before the revision of the instructions, there are still forgivable, "but now the State Food and Drug Administration has modified the instructions for gangliosides, warning about the risks that may lead to Guillain-Barré syndrome, and there are still new cases, which is somewhat incomprehensible." ”

According to a person who has been working in the pharmaceutical industry for many years, after the revision of the drug instructions and the inclusion of the national key monitoring and rational use of drugs, the number of patients with ganglioside-Barré syndrome has not decreased, because some doctors have taken a more covert way to prescribe drugs in the form of self-prepared drugs, allowing patients to go to pharmacies outside the hospital to get drugs.

China News Weekly searched the official website of the State Food and Drug Administration and found that the main components of drugs such as "single sialic acid tetrahexose ganglioside sodium injection", "single sialic acid tetrahexose ganglioside sodium for injection", "compound astryptide injection", "cerebrosine carnosine injection", "compound brain peptide ganglioside injection" and other drugs contain gangliosides, involving 13 manufacturers including Jilin Tiancheng Pharmaceutical Co., Ltd., Harbin Medical University Pharmaceutical Co., Ltd., Qilu Pharmaceutical Co., Ltd., Jilin Sihuan Pharmaceutical Co., Ltd. and so on.

China News Weekly called the marketing department of Harbin Medical University Pharmaceutical Co., Ltd., and a staff member said, "At present, the sales of gangliosides and lipids are OK, and they are sold throughout the country, but the specific sales volume is not convenient to disclose." ”

Available data show that although the sales scale of gangliosides has shrunk in recent years, the market is still considerable. According to data from the Intranet, the market size of gangliosides has declined in 2019, but it is still as high as 3.787 billion yuan. In 2018, the market size of the drug was 5.623 billion yuan, and in 2015 and 2016, the annual sales of the drug exceeded 6 billion yuan.

Taking Saisheng Pharmaceutical (300485.SZ) as an example, its main product of nervous system drugs is "Saidian" single sialic acid tetrahexose ganglioside sodium injection (GM1). According to its 2020 annual report, in 2020, Saisheng Pharmaceutical achieved operating income of 1.094 billion yuan, of which revenue from GM1 accounted for 11.76%, which estimates that The sales of GM1 of Saisheng Pharmaceutical in 2020 is about 129 million yuan. According to its 2019 annual report, GM1 revenue accounted for 17.85% in 2019, which estimates that the sales revenue of GM1 in that year was about 213 million yuan.

In addition, according to buchang pharmaceutical (SH: 603858) announced on August 5, its holding subsidiary Jilin Tiancheng Pharmaceutical Co., Ltd. drug "compound brain peptide ganglioside injection" will withdraw from the Shandong Provincial Medical Insurance Directory on November 1, 2021. It is worth noting that the product's operating income in 2020 was 1.244 billion yuan, accounting for 7.78% of Buchang Pharmaceutical's 2020 annual revenue.

Investigation丨 A "miracle drug" with hundreds of paralyzed patients

(At present, domestic pharmaceutical companies that produce ganglioside drugs and the corresponding drug names.) Collation information source: State Food and Drug Administration)

In the view of Liu Zhihui, the leader of the "Ganglioside Lipid to Grimbali Rights Protection Mutual Aid Group", as long as this drug is still in production, there will still be people who will be "recruited".

Chai Min, a partner at Beijing Yingke Law Firm, told China News Weekly that the controversy over ganglioside drugs involves scientific research on drugs, drug management mechanisms, doctors' drug specifications and other issues, "because the state has not banned the production and circulation of the drug, the controversy will continue."

A tough road to rights protection

It has been more than two years since Liu Yun fell ill, but the progress of rights protection has not been satisfactory.

Her husband, Wang Zhanqun, told China News Weekly that the cycle of judicial proceedings is very long, and for an ordinary person, the channels for rights protection are not smooth. "Initially, I would report to the authorities once or twice a week, but after half a year, I found that the report was like a stone sinking into the sea, and there was no result."

Chai Min said that from a legal point of view, medical disputes related to ganglioside drugs are generally evaluated by the relevant forensic appraisal institutions on whether there is a fault in the hospital's medical behavior and whether there is a causal relationship between the use of gangliosides and the adverse consequences caused by patients. The court then determines whether the hospital or pharmaceutical company should be liable based on the results of the appraisal.

However, she also mentioned that due to the high degree of professionalism of medical technology, it is difficult for non-professionals to judge, and the court can generally only evaluate whether the operation of doctors and hospitals conforms to the operation process, while patients without professional knowledge are more difficult to judge whether the doctor's operation is at fault. This is also the main difficulty in protecting the rights of patients.

Liu Zhihui believes that the problems reflected by patients with ganglioside-related Guillain-Barré syndrome are mainly concentrated in three aspects: First, after the state required the revision of the instructions for the single sialic acid tetrahexose ganglioside sodium injection in 2016, some pharmaceutical companies did not modify the instructions in time and were playing "edge ball"; second, hospitals and attending doctors had the problem of excessive medication (repeated administration) and over-range medication; third, when patients used drugs, most hospitals did not fulfill their risk notification obligations.

A number of patients and their families reported that when they communicated with their doctors, most of the doctors replied that they did not deny that the use of gangliosides caused Guillain-Barré syndrome, but also did not confirm.

An industry insider, who did not want to be named, told China News Weekly that the reporting channels for adverse drug reactions are reported at the first level and generally do not accept reports from individuals. For adverse reactions such as Ganglioside-Valle syndrome associated with gangliosides, doctors sometimes choose not to report it to the hospital, so that the hospital is not aware. In addition, because it is difficult for patients to see the instructions of the drug during infusion, many people will not realize that their symptoms are adverse reactions, and doctors also believe that more is better than less.

In January 2017, Zhao Xin was admitted to the First Hospital of Shijiazhuang Medical University due to a fall. During this period, he was injected with cerebrosine carnosine injection, and his limbs were weak and paralyzed, and he was later diagnosed with Guillain-Barré syndrome. On December 20, 2019, Zhao Xin took the First Hospital of Hebei Medical University to court, and the case has not yet been closed.

So, do doctors still need to bear the corresponding legal responsibility for the use of gangliosides in the case of patients suspected or confirmed Guillain-Barré syndrome?

Chai Min believes that if the doctor still uses ganglioside drugs under the above circumstances, he is at fault and needs to bear corresponding responsibility. At the same time, because the doctor performs his duties, the hospital will eventually bear the corresponding medical damage compensation liability, such as medical expenses, lost work expenses, nursing expenses, disability compensation, etc.

The production enterprises of gangliosides involve dozens of pharmaceutical companies, among which liang Qiuyu's "cerebrosine carnosine injection" is produced by Jilin Sihuan Pharmaceutical Co., Ltd. Asked if there was a claim for compensation, her son said they had now formally sued the hospital and intended to sue the pharmaceutical company in the future.

China News Weekly inquired about relevant drug information and learned that Beijing Sihuan Pharmaceutical Co., Ltd., Changchun Xiangtong Pharmaceutical Co., Ltd. and many other enterprises have added content such as "Guillain-Barré syndrome cases that may be related to the use of ganglioside products in post-marketing monitoring of drugs at home and abroad" in the precautions of "single sialic acid tetrahexose ganglioside sodium injection instructions", and prompted patients with Guillain-Barré syndrome to prohibit this product.

A staff member of Beijing Sihuan Pharmaceutical Co., Ltd. told China News Weekly that it has not received any adverse feedback from patients on the drug "single sialic acid tetrahexose ganglioside sodium injection". "Generally, the adverse drug reactions collected will be reported to the company's own pharmacovigilance department for evaluation, and the pharmacovigilance department will follow up the adverse reaction cases, and then do the next step according to their assessment."

A staff member of the adverse reaction department of Jilin Zhen'ao Pharmaceutical Co., Ltd. told China News Weekly that he had received bad feedback about the cerebrosine carnosine injection. The staff member explained, "Because the drug will have adverse reactions, and other companies are also producing this product." We have revised the instructions in a timely manner in accordance with the 2019 document issued by the State Food and Drug Administration. ”

Liu Zhihui said that for patients, they are passively receiving treatment most of the time, and doctors and hospitals should be obliged to inform of drug risks. In addition, for a drug that has not been written into the treatment guidelines, it can be used on a large scale in China, whether it involves the interests behind the problem is not yet known, and whether the pharmaceutical company has really done pharmacological safety research on gangliosides and lipids also needs to be questioned.

For Su Zhongwen, his biggest wish at present is that his wife Liang Qiuyu can recover as soon as possible. He now gives her rehabilitation 3-4 times a day, but months have passed and his wife's condition has not improved.

Investigation丨 A "miracle drug" with hundreds of paralyzed patients

Liang Qiuyu's husband is giving her a hand massage. Photo: Photo by Zhao Mu

"Hopefully she'll be able to take care of herself, but it's almost a luxury." Su Zhongwen said helplessly, "Until now, she has not improved at all, and her treatment attitude is also very negative, feeling that the front is dark, and she can't see the direction and hope at all." ”

(At the request of the interviewee, in addition to Liu Zhihui, the patients and their families in the article are pseudonyms.) )