"Liver degeneration" is a rare disease, "penicillamine piece" can relieve the symptoms of the disease. But recently, a "liver degeneration" of haikou city, found that patients with ate more than 30 years "penicillamine piece" suddenly shut down, can not buy. And the medicine "a" do not eat will lead to deterioration. Patients and families.
"Life-saving medicine" suddenly shut down The whole city general mobilization found a small amount of inventory
This year, 45 patients Cao Lizhu is 12 years old suffering from a rare disease - "liver degeneration". When she was 3 years old, my father for firefighting glorious sacrifice, more than 30 years, Lin is her mother tree individuals and seven took her around and heal, take medicine on time every day to take care of her, including quantity must be on time every day to take "penicillamine piece". But the drug suddenly broke goods.
Patients with mother Lin Shulan: can I say stop, or loss of, who knows, I reduce a day, is the result immediately.
The reporter understands, "degeneration" liver disease early diagnosis, if it is less commonly affected quality of life and survival, but little late treatment effect, fast and even life-threatening condition change. Cao Lizhu due to illness for a long time, has led to the cerebellum atrophy, loss of hearing, is also uncertain when they become very grumpy.
Patients mother Lin Shulan: I'm going to the pharmacy, said there is no medicine, I panic, because of my medicine. I will call to ask manufacturers, production manufacturer said, not anymore. So worried and scared, so she said my life is only a few destiny, no way out.
Desperately, Lin Shulan had to turn to the local media, after local media reports, the haikou city related department, more than 30 hospitals, including pharmaceutical sales enterprise action, help Lin Shulan find medicine, finally found a small amount of inventory in a pharmacy. At present, the group of "penicillamine piece" inventory sufficient to support Cao Lizhu dosage of a year, until the manufacturer to resume production.
Small medicine, shortage of cheap drugs often shut down How to keep "life-saving medicine" life
The reporter understands, in recent years many small, cheap drugs are often out of stock, like Bai Shu for the treatment of childhood leukemia, heart surgery with protamine, treatment of hypothyroidism "excellent armour" update to several categories such as drugs, appear the phenomenon of out of stock.
National health care expert advisory committee of the state council Liu gg: the price of the national development and reform commission (NDRC) at the national level control, and to the provincial level public bidding, in discussing the price mechanism, is still in a groping process. Led to a smaller these products on the market demand, is more difficult to survive, natural, our pharmaceutical enterprises have more choice, it will choose not to develop production of such small all the medicines, so cause the shortage of the product is more and more serious.
Patients also afraid of enterprise production from now on because of the weak profits or even losses.
Patients with mother Lin Shulan: because the country is a factory, if there is no medicine, the patient? Only sitting at home, such as dead, really is very clear.
Recently, the state council issued the "much starker choices-and graver consequences-in" national drug safety planning, the planning is put forward, to ensure clinical required, the amount of uncertainty at a low price, save the preparation and rare diseases market supply. This also means that these "life-saving medicine" in the future or is no longer difficult to find. One clear, also encourage have clinical value for urgent clinical needs by new drugs and generic drugs research and development of the listed.
National health care expert advisory committee of the state council Liu gg: if you want to guide non-governmental enterprises, private enterprises to participate in the shortage of drug research and development and production, it should through the market means of normal, to let them get a reasonable, can compensate for his past investment costs so some institutional arrangements, to solve the normal development and production of their behavior. Government to do some relevant adjustment, or held in the government and enterprises, (state-owned enterprise) to complete the task, but in China, there are still such advantage, because we have a large number of state-owned enterprises still exist, in the pharmaceutical industry, they should naturally become the main force of complete the task.
Nine compounds have no children's formulations
In addition to the small medicine cheap drugs are often out of stock, the shortage of the children's medicine is also a problem. It is understood that China's existing more than 3500 kinds of medicines, more than 60 only meant for use by children, 1.7% of the total, nine compounds no children's formulations.
At present, the national health and family planning commission approved 15 large children's drug clinical trials, medical institutions can be children, experts say, as a kind of medicine, 100 cases of clinical medicine, three to five years, willing to participate in clinical trials may only 20 or 30 cases of children, and even less. Drug dosage, however, children with all ages, weight will be adjusted, new drug research and development and the doses of production will be even harder.
National health care expert advisory committee of the state council Liu gg: domestic and international all the same, and children in children's drugs research and development production, condition actually than adults are more strict, more demanding, this is common in China and other countries.
The Beijing children's hospital, deputy director of the medicine Wei Jinghai: shortage of most of these drugs on some specialized subject, the main reason is because the patient groups are smaller, so the market may be smaller, the enthusiasm of enterprise production research and development will be a little worse.
atlas
Heart drug digoxin, for example, a bottle of medicine for children digoxin oral solution is 30 ml, only 1.5 mg dose of drug, in the market retail price of 21.52 yuan. Each 30 adults taking digoxin tablets every piece of the dose of 0.25 mg, the market retail price of about 30 yuan, different manufacturers vary slightly. Children's medicine is not only the cost is high, as a solution to make and save the cost will be higher, but for the children's medicine, the dose of solution, more accurate and easier to let the children to take.
Pediatric directory is the current situation of the children's medicine, a total of 1098 kinds of drugs, medicines for children only 45 species, accounting for 4%, the rest of the 1053 drugs, usage, dosage of varieties have children of about 43%. This means that more than half of the drugs in the pediatric use without labeling the usage and dosage of children.
The Beijing children's hospital, deputy director of the medicine Wei Jinghai: some drugs with narrow therapeutic window, is it treatment dose and dose of poisoning is very close to, if dose get inaccurate, it is easy to cause poisoning. So often need to test and so on blood concentration of for drug delivery.
Journalists in Beijing children's hospital, see the pharmacist to artificial to allocate doses, and drugs to grind into powder, can be quantitatively by number of children with kg.
The children's medicine shortage into the worst-hit areas
Because children's body is not yet mature, the whole body tissues and organs is still in the stage of growth and development, the function is not perfect, drug use, a small error, can contribute to the child's lifelong regret.
The shortage of relevant experts said, the children's medicine mainly in three aspects. First is the shortage of some drugs, the drug used to treat some disease specialist, both adults and children; The second is the shortage of children's drugs on the specifications and formulations, adults can take capsule or tablet, but cannot take children, in addition there is a difference on the drug dosage will; The third is specific to the relative lack of neonatal medicine. Because children medicine research and development cost is high, the risk is big, long, few parents want their children to do try, so clinical trials is difficult, many enterprises, research and development unit are not willing to work in this area. According to the report, in the children group, drug poisoning of all visits the proportion of children poisoning, up from 53% in 2012 to 73% in 2014. Age, from poisoning children aged 1-4 proportion is the largest, accounting for 64%.
Since 2014, the national six ministries issued about security after the opinions of the children's drugs, many functional departments also medicine for children in positive ways to solve the practical problems. Put into the national essential drugs in the directory of fixed-point production, fixed supply drugs; The agency is medicine for children in the declaration form or changing the child corresponding usage and dosage of the drug instruction content, give priority to register for examination and approval, to speed up the approval.
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