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2“”。，2000，20，。、、、……。
2“”。，2000，20，。、、、……。、，？，。
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“”“”“？”“？”“？”25，，、、20“”。
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18，、13。，，。，，、、，。Cystic fibrosis has been included in the first list of rare diseases issued by the five departments.
Cystic fibrosis has been included in the first list of rare diseases issued by the five departments.
Up to now, 166 rare diseases and more than 60,000 registered cases have been registered on China's National Rare Disease Registration System.
At the same time, with the establishment of the National Rare Disease Diagnosis and Treatment Collaboration Network, the role of multidisciplinary consultation in solving the difficult diagnosis of rare diseases has become more prominent.
“If the first-time hospital suspects that the patient has a rare disease but cannot be diagnosed, it can refer the patient to Peking Union Medical College Hospital, the leading national hospital of the collaboration network, to confirm the diagnosis and form treatment opinions through multidisciplinary consultations.
Establishing rare disease type-specific clinical databases, setting up study groups according to disease types, carrying out online training to share cases and the latest diagnosis and treatment plans.
The diagnosis should be faster and more accurate.
During the "13th Five-Year Plan" period, through the national key research and development program "Precision Medicine Research" and "Reproductive Health and Major Birth Defects" key special projects, support the development of rare disease clinical cohort research, and the technical level of rare disease screening, intervention, and treatment in my country Further improve.
Studies have shown that more than 80% of rare diseases are caused by genetic factors, and 50% develop during birth or childhood.
"Rare diseases are mostly related to genes, and most of their diagnosis relies on the results of gene sequencing.
"Therefore, it is very necessary to improve the efficiency and accuracy of rare disease diagnosis by establishing an authoritative genetic testing center.
Zhang Wen, deputy director of the Department of Rheumatology and Immunology of Peking Union Medical College Hospital, told reporters that with the enhancement of genetic testing methods, single-gene related rare diseases are easier to be diagnosed than before.
She cited, for example, that IgG4-related diseases are rare diseases of the immune system, which can affect almost any organ and system throughout the body, with various clinical manifestations and different onset symptoms.
Zhang Wen believes that it is necessary to popularize the knowledge of rare diseases diagnosis and treatment in the stages of medical postgraduates and continuing education, so as to raise the level of awareness of various rare diseases in the entire medical community.
Multi-party, multi-system, and multi-level protection of medications Multi-party, multi-system, and multi-level protection of medications
After nearly two years of adjustment, the new medical insurance catalogue that will be implemented on March 1 has included dozens of rare disease drugs, giving patients hope of life.
After nearly two years of adjustment, the new medical insurance catalogue that will be implemented on March 1 has included dozens of rare disease drugs, giving patients hope of life.
Ding Jie, chairman of the Rare Disease Branch of the Beijing Medical Association and a professor at Peking University First Hospital, said that patients with rare diseases often need to take medicines for life, and it is far from enough to rely on the patients themselves and the media to protect their medicines.
Policy guidance is needed.
Ding Jie once proposed the "1+4" model: "1" means that rare disease drugs are included in the national medical insurance drug catalog as much as possible, and "4" means multi-party, multi-system, and multi-level, which means charity funds, special assistance, and commercial insurance.
And the patient's individual multi-party payment to share the cost of the medicine.
And the patient's individual multi-party payment to share the cost of the medicine.
According to Shi Luwen, a professor in the Department of Pharmaceutical Management and Clinical Pharmacy, Peking University School of Pharmacy, if rare disease patients are found in the national medical information and registration system, the purchase of medicines based on a certain rare disease patient as a unit can reduce the need for companies to find patients.
Cost, while reducing the price of medicine.
Cost, while reducing the price of medicine.
The historical records suggest that an open platform with government guidance, multi-party participation, and independent operation by a third party should be established for doctors and patients to find information about rare diseases, diagnosis and treatment institutions, etc.
He believes that the data base for rare diseases information should be consolidated, and more drugs should be gradually included in the medical insurance catalog.
The rare disease drugs that are clinically diagnosable and treatable, have been marketed, and have high public awareness should be included in the medical insurance catalog first.
He believes that the data base for rare diseases information should be consolidated, and more drugs should be gradually included in the medical insurance catalog.
The rare disease drugs that are clinically diagnosable and treatable, have been marketed, and have high public awareness should be included in the medical insurance catalog first.
First-line clinicians report that some rare disease treatment drugs are recommended by domestic and foreign experts or guidelines, and are not expensive, but because the indications listed in the drug manual do not include the rare disease, they cannot enter the medical insurance drug list.
"This part of the drug insert sheet urgently needs to include treatable rare diseases into the scope of indications, while simplifying the indication change procedure, for example, it can be changed based on diagnosis and treatment guidelines or expert certification.
" Ding Jie suggested.
"This part of the drug insert sheet urgently needs to include treatable rare diseases into the scope of indications, while simplifying the indication change procedure, for example, it can be changed based on diagnosis and treatment guidelines or expert certification.
" Ding Jie suggested.
In addition to lowering drug prices, the "last mile" issue is also crucial.
Ding Jie said that some rare disease drugs that have been included in the medical insurance catalogue with reduced prices are still expensive, impacting hospital performance, causing hospitals to be less motivated to purchase drugs and patients cannot buy drugs.
Such phenomena urgently need policy guidance so that drugs for rare diseases do not account for hospital performance, while establishing a green channel for patients to apply for drugs, and encouraging qualified pharmacies to provide drugs for patients with rare diseases.
Ding Jie said that some rare disease drugs that have been included in the medical insurance catalogue with reduced prices are still expensive, impacting hospital performance, causing hospitals to be less motivated to purchase drugs and patients cannot buy drugs.
Such phenomena urgently need policy guidance so that drugs for rare diseases do not account for hospital performance, while establishing a green channel for patients to apply for drugs, and encouraging qualified pharmacies to provide drugs for patients with rare diseases.
