Patient's medical recovery of rare disease of our country demands the society urgently to pay close attention to

Patient's medical recovery of rare disease of our country demands the society urgently to pay close attention to
Patient's medical recovery of rare disease of our country demands the society urgently to pay close attention to
Our country has no laws and regulations of rare disease and treatment medicine management yet at present, the patients can not even get any society, discriminated against for July 22 too in such aspects as medical treatment, employment, China Charity Federation starts in Beijing " Rare and ill to succour the plan - -Think but Zambia presents the medicine project charitably " . "Dagger-axe thank the intersection of disease, Pompeii and disease, become the intersection of bone and complete disease "These make the doctor at a loss what to do, letting the patient can find no way out, isolate and helpless disease, rare disease! Reporter know World Health Organization define ill number of people as account for disease between the total 0.65�� - 1�� population rare disease, there are 5000- 6000 kinds of rare diseases already confirmed at present, account for 10% of the human disease, the effective therapeutic medicine one is less than 1%. The international rare disease organization determines as on February 28 annual " The rare disease day of the world " ; Medicines used for preventing, treating, diagnosing the rare disease, are called vividly " orphan medicine " . It is introduced, patient's total number of rare disease of our country by a million, but does not have official authority that define to rare disease, have not seen the precise report either in kinds of Diseases and data which are given much trouble the crowd. " orphan medicine " Also in " there are no medicines at home, there are medicines that can not come in abroad " Awkward condition. The integral level of making a diagnosis and giving treatment of rare disease demands urgently to be improved into a typical characteristic of not complete disease of bone to be the fragility increase of skeleton, so also called " The gristle disease " . The folk custom is called disease patient of the gristle " The porcelain baby " ,Mean and break to pieces once touching, they may suffer fracture many times in all one's life. Mew, 5 years old, disease patient of the gristle, was born in Wuhan. Born the intersection of both legs and the intersection of person who have no cause and fracture of mew for less than two day, there was uncountably many number of times fractured so far, even sleep on the bed, may fracture. Follow this family like the misfortune like the shadow following the person. Mew two year old, a long time, my father murder robber, mother of mew can't bear, stand pain and the intersection of mew and ill pressure that lose one's husband, leave the mew behind and go out to work as a temporary labourer alone. The mew is raised by the grandmother over 60 years old. The treatment of the mew needs to get to Tianjin, treat fee and travelling expenses once and want 4000 yuan, needs to go 4 times every year. For grandmother, it is a heavy burden. The intersection of mew and kindergarten no, does not know whether whether could go to school in the future, the grandmother will hope the society can let the mew enjoy the right to receive an education. 27 -year-old " The porcelain baby " It is a disease patient of gristle to show loving care for the grand gull of association's president and king, she went through the first fracture in life a long time years old, because the competence of making a diagnosis and giving treatment to the gristle disease of hospital of the hometown Jinan of Shandong is limited, she is regarded as rickets, calcium deficiency and treats, in more than ten years old, her disease materials are passed to U.S.A., diagnose as the gristle disease formally, had already missed treating one best at that time. Relatively less because of ill number of people of each number of rare disease, adding the hospital at the basic level that quite a lot of hospitals especially technical force are weak lacks the essential rare disease diagnostic device, and our country has not made reasons such as the norm,etc. of making a diagnosis of the rare disease yet, has made the rare disease patient face the numerous difficulties in sifting and looking into, preventing and curing, most patients are leaked examining, misdiagnose and invalid inspection for a long time. Attending physician of dept. of orthopedics of Tianjin hospital Ren Xiu treats the gristle disease intelligently smallly and famously at home, over 140 patients will come because of respect for the fame to all parts of the country. He says, some large hospitals are unwilling to invest too much energy to pay close attention to this small number, lacking the corresponding treatment norm too at home, most patients go around the whole country to come to Tianjin to already sentence to " death penalty " before going to a doctor again ,Have also consumed a large number of energy and financial resources. Ren Xiu emphasizes intelligently, the strength that only depends on the specific doctor is limited, competence is the key point that whole ones that improve the rare disease make a diagnosis. Understanding of rare disease and handling capacity, reflect the emergency ability to the rare disease of a society, also reflected a hospital and a level of doctor's medical engineering level. Hospital Professor Wang ChengLin of Shenzhen of Peking University proposes, the responsible institution of the hygiene can set up relevant administrative department, make the corresponding encouragement and policy of promoting the rare disease to study; The finance wants the special fund of presuming rare disease cooperation and studying etc.; Do an investigation to number and characteristic of the rare disease of our country as soon as possible, make the rare disease standard for one period according to the national conditions. " orphan medicine " User ask medicine difficult 31 -year-old Hefei municipal the intersection of post office and worker whether one law mine the intersection of disease and patient in Ya Zhang, begin to have illness coming on at 4 years old, make a definite diagnosis of at the age of 28. This kind of rare inborn hereditary disease in the world, because the patient is congenital in the body to lack an enzyme, result in metabolizing all over the obstacle, four limbs pain vigorously, the organ is depleted and jeopardizing the life. The therapeutic medicine of this disease was developed successfully by U.S.A. in 2003, is used in more than 30 countries or regions in the world. Because there are not rare disease medicines at home to import the landscaped roadway, go to receive treatment outside the border, will cost 14,000 dollars each month, and this kind of medicine was not listed in the medicines catalogue of the medical insurance, the general family is unable to bear. Get, treat effectively, Zhang Ya condition develop, quickly, have and go on renal transplantation in 2006, life is very painful. Zhang Ya compromises to the serious illness, he sets up China's rare disease network, propagates various popular sciences, hope to help to have the rare disease patient of the same experience more. It is reported, treat the favor of the easier to be researched and developed one of medicine of common disease, frequently-occurring disease and great disease at home at present, and rare disease narrow with high costs because of market in medicine, in addition unable to wipe out by the medical insurance, domestic the intersection of pharmacy and the intersection of enterprise and development, introduction, produce, nobody shows any interest in nearly in this, the rare disease patient can use to can only choose expensive imported medicine or having no medicine. Most rare disease medicine price high, consume, need, spend more than ten Wan, hundreds of thousands even up to a million every year, almost a patient can not afford. At present, a lot of countries and regions of the world issue " rare disease and management of using medicine " in succession Laws and regulations,can get by essential treatment by being last this part, have rare medicines of disease research and develop and prevent and cure experience, set up, ensure mode to rare medical treatment of disease, have launched the policy research project about the rare disease. The China social insurance learns president Wang JianLun how to say, our country has no laws and regulations of rare disease and treatment medicine management yet at present, the patients can not even get any society, discriminated against too in such aspects as medical treatment, employment. JianLun Wang point out such as cancer, leukemia, renal transplantation great part of disease make a diagnosis the fee has already been included in the comprehensive arrangement for serious disease of the medical insurance at present especially, including dagger-axe thank disease, law mine disease, become the intersection of bone and complete disease a lot of rare disease inside in row their. " rare disease succour plan " Start July 22, launch in Beijing " rare disease succour plan - -Think but Zambia presents the medicine project charitably " On the ceremony, enterprise U.S.A. of the bio-pharmaceuticals is strong in Zambia Company to promise, introversive China Charity Federation will donate the medicine valued 300 million yuan in one and a half years, for the Chinese dagger-axe to thank Patient's therapeutic use of disease. Finish every preparation already at present, nearly hundred dagger-axe thank the intersection of disease and patient begin, reexamine and choose for the first time by medical science successively already? ��? Since 1999, U.S.A. good for the intersection of Zambia and Company through the intersection of world and the intersection of health and foundation, thank the intersection of disease and patient, offer thought for ten year free for overth serious the intersection of disease and dagger-axe of China but medicine, treatment of Zambia, most patients have already resumed normal life, study and worked. In July of this year, that think but Zambia presents medicines to work charitably passed on to China Charity Federation formally by the foundation of health in the world. This project will be in BJ Children's Hospital, BJ Union Hospital, Xinhua hospital, medical research center of children in Shanghai, subsidiary children's hospital of Zhejiang medical university, Zhongshan medical university of Shanghai attach to the first hospital and 6 hospitals to carry out, accept the dagger-axe presenting medicine and thank a disease patient and follow up a case by regular visits to and treat medical science in these 6 hospitals nearby. Great to say China implement special examination and approval system to rare administration of disease already at the same day unveiling ceremony whistle Chen, Vice Minister of Ministry of Public Health, will also rely on the chance of the medical system reform, will bring it into state policies system progressively, form the situation in which government, society, enterprises pay close attention to the rare disease patient together. Staff reporter Gao Sha


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