內容目錄
(People’s Daily Health Client Chen Longfei) “The number of rare diseases in my country exceeds 20 million, and many related drugs that have been marketed abroad have not been approved in my country, making it difficult for patients to take medication.” During the National People’s Congress, a member of the National Committee of the Chinese People’s Political Consultative Conference Gong Hanlin submitted the “Proposal on Improving the Approval Mechanism for Imported Rare Disease Drugs and Addressing the Needs of Patients”, suggesting that a rare disease diagnosis and treatment department should be established to do a good job in the review and approval of rare disease drugs, so as to solve the problem of drug use for rare disease patients.
Gong Hanlin said that although the incidence and prevalence of rare diseases are extremely low, my country’s population base is large, and there are still large groups of rare diseases in China . Therefore, rare diseases are both medical and social problems. At present, foreign drugs for some rare diseases are all listed, but some drugs have not been approved in my country.
Previously, a reporter from “Health Times” reported that more than 1,000 families of children with rare diseases jointly asked the whole society for clobazam drugs due to lack of drugs. The family members of the children said that their children suffered from rare epileptic encephalopathy such as infantile spasms, Dravet syndrome, LGS syndrome, and Ohtahara syndrome, and most of them were at risk of drug discontinuation.
Gong Hanlin said that the drug is not licensed in China, and if patients with rare diseases want to treat their diseases, they can only use abnormal channels to purchase them from overseas, and are accompanied by “suspected smuggling, transportation, and selling of counterfeit drugs (drugs). )”risks of.
“Controlling ‘clobazam’ is a legal imperative, and it is imperative that patients need ‘drugs’ to save their lives.” Gong Hanlin suggested that a rare disease diagnosis and treatment department should be established based on the existing relevant rare disease medical institutions in the “Boao Lecheng International Medical Tourism Pilot Zone”, the only “medical special zone” in my country’s medical field that is open to the outside world. review and approval.
At the same time, make good use of and make good use of the state-entrusted Lecheng Pioneer Zone with the policy of “first try”, and work with the State Food and Drug Administration to establish drugs for rare diseases, especially the controlled psychoactive drugs strictly controlled by the State Food and Drug Administration import approval mechanism. It is adopted that hospitals and purchasing agents apply to relevant government departments, and then authorize relevant hospitals and purchasing agents from the national level to grant special channel purchasing rights, and stipulate the corresponding purchasing volume according to actual needs, and put them in the relevant national drug warehouses to ensure Medication of patients, solve the problem of drug use of rare disease patients, especially “clobazam” drugs, protect the basic medical rights and interests of rare disease patients, and prevent them from taking desperate risks to save lives.
“Don’t let the scene in the movie “I’m not the God of Medicine” repeat, and make sure that life comes first.” Gong Hanlin said.
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