05
2020
-
06
Zhejiang Province rare disease special drug negotiation results public
Late last year, the zhejiang province issued "about rare diseases in zhejiang province to establish medical security mechanism of notice, in the notice has been clear about the province health bureau in accordance with the principle of" the price negotiation and dynamic adjustment ", according to the province of rare disease drug expert committee recommended rare diseases, combined with the province's economic and social development level, rare disease medication security fund balance, etc., To organize negotiations on drugs for rare diseases.
Late last year, the zhejiang province issued "about rare diseases in zhejiang province to establish medical security mechanism of notice, in the notice has been clear about the province health bureau in accordance with the principle of" the price negotiation and dynamic adjustment ", according to the province of rare disease drug expert committee recommended rare diseases, combined with the province's economic and social development level, rare disease medication security fund balance, etc., To organize negotiations on drugs for rare diseases.
The insured persons are: those who have been registered in Zhejiang province for more than 5 years at the time of diagnosis; Persons under the age of 5, registered in Zhejiang Province, whose biological parents have been registered in Zhejiang Province for more than 5 years to participate in basic medical insurance.
In terms of cost guarantee, patients with rare diseases will pay the part of their own expenses when seeking treatment in the designated treatment hospital, and other expenses will be settled directly by the medical insurance agency and the designated treatment hospital. Drugs for rare diseases are not included in the total medical insurance budget management and drug proportion assessment of designated treatment hospitals.
The two negotiated drugs are special drugs in the treatment of Pompeii and Fabre diseases, which bring hope for the treatment of domestic patients.
Beautiful and great
Melizan is a specific drug of Sanofi for the treatment of Pompe disease. The drug was launched in the United States in 2007 and approved by the State Food and Drug Administration (CFDA) for the treatment of Pompe patients at the end of 2016.
Pompe disease is an autosomal recessive genetic disease caused by acid α-glucosidase deficiency. According to the onset time of symptoms and signs, it is generally divided into infantile type, child type and adult type. The neonatal incidence of Pompe disease is only 1/40000. The international average time to diagnosis is 7-10 years. For infantile Pompe disease, most patients die within a year or two of diagnosis.
Pompe disease causes severe and irreversible damage to the muscles, myocardium, skeletal muscles and respiratory muscles of its victims. While children of the same age can run and jump, Pompe patients are confined to wheelchairs and rely on ventilators to survive and inevitably die, causing great pain for the patients and their families.
Method buzan
Fabuzan is a specific drug for the treatment of bray disease. At the end of December 2019, it was approved by the National Medical Products Administration for long-term enzyme replacement therapy for patients diagnosed with Fabay disease. It is suitable for adults, children and adolescents aged 8 years and above. This is a domestically approved specific drug for Fabry disease. At present, Fabuzan has been listed in many countries and regions such as Europe and America.
Mine method disease (also called cloth disease) is a rare form of the X chromosome sex linkage of lysosomal storage GSDS, patients often appear such as hands and feet of burning pain, shorter continued for several minutes, long for a few days, sometimes recurring, serious when can't normal life, and the various organs such as kidney, heart, brain, nerve have serious damage caused by pathological changes, Without effective treatment, it can be life-threatening. Symptoms of the disease often appear in children and adolescents. In addition, the clinical symptoms of male patients were more severe than those of female patients, and the average survival time of male patients was shortened by 20 years compared with the control population, while that of female patients was shortened by about 10 years. According to statistics, there are more than 300 patients diagnosed with Fabre in China.
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Pannacean (Henan) Medicine Science Technologies, Ltd.
Address: Henan Pilot Free Trade Zone Zhengzhou Area (Jingkai) Hanghai Road Jingkai 2nd Street Hanghai East Road No. 1291
Mail：haifeng.zhang@pannacean.com
Tel:0371-55159968