They are a group of Ge patient, only is subsidized by a foreign company of medicine existence, life.When this company meets to produce a predicament to stop to help, they sink into the molestation of slight illness, some lives life are close upon death. The Ge thanks a disease to be just about 6000 kinds of a kinds in the rare diseases.The domestic doesn't cure medicine and buys a medicine from the abroad extremely expensive, overwhelming majority the disease of the rare disease's growing have never brought into to cure to protect system, this is rare patient widespreadly meet of predicament.Yesterday, the health department relevant representative director said and made a diagnosis and gave treatment to the rare disease of foundation research the inclination pecuniary aid that the establishment corresponded measure, and will gradually raise a rightness of rare patientses medical treatment the guarantee and society helped level.The counterplan rare disease should bring in to cure to protect director numb wood in the office of rare disease salvage of kind head quarter of the China kind deputy secretary in the head quarter, China to say, since 2008, the kind head quarter starts passing a person big representative, Chinese People's Political Consultative Conference member of committee at two will ascend to put forward concerning rare disease of the lawmaking guarantees of the proposal or proposal pushes a nation to bring into the treatment of rare disease to the category of medical insurance quickly further by expecting, but yields results very tiny. The Chin Hua university law school health method research director's dawn king in the center thinks that the society economy develops certain level,Women Carrera SunGlasses providing for rare patient's the medical guarantee is governmental responsibility, " how much kind the rare disease brings into to guarantee scope and protects to arrive what extent, all can according to government financial power to gradually develop, but the premise is to have to bring into this community to the medical treatment to guarantee system in.On this, the government should adopt an aggressive attitude." Dawn king says that bringing into the rare disease to the medical treatment guarantees system, don't make the way of one Lan son, can gradually push forward.Now a lot of rare diseases is have no way treatment, "government completely can have way treatment, can cure of the kind of the disease of rare disease bring into first to guarantee system and provide the medical guarantee and economic aid of necessity for rare patient's."He puts forward and have the place of public finance real strenght can bring into the rare disease to the region of curing and protecting scope, but need not etc. the nationwide lawmaking come out. Xu Kai Feng also suggests that the disease that the department concerned can lead the outbreak as certain amount as follows unifies to pack and lists catalogue, is whole to bring into to cure to protect using of each rare disease medicine and submits an expense accounts. "Lucky" sufferer 22-year-old D Ran the head isn't high, wear a pair of glasses.He is economic trade university economy in capital city to fasten big three studentses now. Mother Zou Wei the Ping clearly remember, the D Ran is confirmed to thank a disease for Ge at the age of 2 in 1990.Ge's thanking a disease is a kind of rare disease, will cause sufferer the liver Pi is greatly swollen, skeleton pathological changes, if being incurable to treat will to growth dilatoriness, the whole life disable and sick even death. In 1990, Peking record the Ge in the volume thank patient only 2. "The doctor says that there being basically no medicine in domestic can cure and let us go home etc.."The Zou Wei Ping gives a person to go to the data that the national library checks a rare disease, oneself doesn't pass any information of newspaper as well.In 1994, she see the medicine that a company gave birth to in the United States can cure a Ge disease from the newspaper, excitedly run to beg help in the United States embassy and contacted this company. "The fax that the other party hair comes over says that a price of medicine is USD 1480, the amount of of the D Ran is 5 a month medicines."The Zou Wei Ping then month wages only has 300 dollars, the unit made a contribution to 30 many ten thousand, use these money her to remit for this company to go to 150,000 dollars and buy a medicine. Always lead 15 day, she just receive the fax of the other party company, say that the medicine sent."Endure long hardship me for that 15 dayses can't forget from cradle to the grave, I don't go to bed all day long and walk around in the home.150,000 dollars, was an a mint of money at that time, but even if be cheated, I also wanted to try and see."Zou Wei Ping says that the D Ran medicine cured in less than a year, the belly wasn't big, the joint of body isn't painful, also ability similar to normal kid activity, go to school. Zou Wei Ping thinks that the D Ran is a very lucky kid, "misery in of unusually lucky, he at least has a medicine to cure.As long as the kid can live down and then have a hope."She thinks that the medical science is getting more flourishing hereafter, the domestic perhaps can also produce this kind of medicine, the kid truely has been already saved by that time. The Ge thanks a patient's demand to the whole life use a medicine, otherwise the disease will relapse.At the end of 1996, money in the Zou Wei Ping hand has been already run out of and also lends the debt of more than 10000 dollarses 20, really hard is after, the medicine of D Ran has to break.The disease relapses than before more serious, "the joint is very painful, can not walk, I can lie on the bed and feel that I am about to die just all day long."The D Ran recalls. But in this period, production company American company of this medicine started the free salvage of the Ge patient in China, the good luck again condescends to come D Ran in the body, and his becoming is helped one of the objects. Since 1997, the D Ran will receive the medicine that the other party air freight comes over for every 3 months, more than ten in the last yearses never interrupted.Because in order to inject a type, the medicine of the treatment every 2 weeks, the D Ran will inject medicine."Inject a kind of habit, sometimes I will forget I sick."These more than ten years inside, the D Ran feels oneself heel other people's nothing important too greatly distinct, he and the normal kid Be similar to study, also passed examination university. In July, 2009, let the D Ran be impressed with.He by chance discovers that the always punctual medicine didn't send to.He with is responsible for rare disease in the kind head quarter of the China that the medicine issues to help office contact to know, that company because of production appear a predicament, medicine production consumedly decrease, provide for China of help medicine to have to stop, either.The reporter searches and discovers online, the company last year still once faced be procured. This stopping is more than a years, the Ran of the D made 56 diseases this period."Is painful in bone, painful get hard bear with, need to make a disease painful more than 20 dayses each time, compare at a time a severe."This kind of violent ache lets the D Ran realize that oneself can not really be a normal person. Is similar to the D Ran, the Ge that accept to help over the medicine of more than 130s in the whole country patient after being bearing with to stop the medicine bring of pain and sufferings. Have the medicine the stopping of more than 130 embarrassed Ge patientses medicine crisis that is difficult to cure have been continuously arriving in the near future, just can solve. China kind head quarter rare disease salvage office performance director, Huang Zi Heng, says that because the business enterprise hasn't come out a predicament and guarantee in the world first the other placeses buy the medicine of using of medicine sufferer as usual, therefore resumed part to provide a medicine just now. Because the amount of medicines is limited, " the sufferer who can guarantee a child sufferer first and have been already been critically ill."Because relapse a condition the severity is behind, D Ran also in the near future get can maintain medicine for 2 month.This more than 130 Ges from now on thank a patient destiny will how?Who don't know as well. The Zou Wei Ping also remembers that when she looks for a help everywhere for the sake of the disease of D Ran in 90's almost the nobody understands she says of what disease, with them explain very for a long time."The society lifted much to get up to the rare disease now, but the life of D Ran still has no variety, " still would not° until depend to donate a medicine is on the hoof".The kind head quarter helps currently of more than 130 Ge Xie Bing's suffererBeing medium is mostly a village sufferer.Because Ge Xie Bing hasn't brought into a nation to cure to protect system, the sufferer in the item is to accept charity to present a medicine currently, but if one day donate item to stop, their treatment expenseses will be a social problem. Having no medicine can cure of predicament in fact, China kind head quarter while signing medicine with the company to help agreement, have a worry."We thought at that time, the light depended business enterprise salvage sufferer too not insurance.Once the business enterprise closes the door or conducts not kind, the sufferers will ask for help to have no a door and wait for their only having to die." The China kind deputy secretary in the head quarter, China kind head quarter rare disease salvage director in the office tingled the wood to once say to reporter of this report, but because the domestic didn't cure the medicine of Ge disease now, the kind head quarter finally still kept accepting the medicine of the company to help item. "Include Ge disease at inside of the rare disease is all hereditary disease, are a kind of risk to everybody, it is a public problem."The concord hospital expert, Xu Kai Feng, of Peking says.According to understand, everybody body up will have the defection and damage gene of very few number, if the spouse both parties' defection and damage gene bumps together, the rare disease may take place. How many rare patient'ses does China exactly have?According to the definition of World Health Organization, the world has been already confirmed of the rare disease have 5000-6000 kinds, but currently only have 1% rare diseases can cure.The outbreak of rare disease leads between 0.65-0.1 ‰s, according to the proportion, our country each kind of rare patient's at least have last must. "The rare patient key has no medicine."The porcelain doll sufferer, the porcelain doll association president of association Wang Yi Ou says that porcelain doll sufferer now didn't°yet any 1 kind definitely writes to have adaption of to the disease medicine. "But a rare patient if early discover and early cure, his ability is as life as normal person, the life destiny probably will be different."China kind head quarter rare disease salvage office performance director, Huang Zi Heng, introduce, currently our country haven't drawn up exclusively rare disease management and medicine management system.Though the category of rare disease is diverse, because patient's number is little, the development throws in huge, the domestic almost didn't exclusively cure the medicine of rare disease currently, much medicine all ushered in from the abroad, and the price is extremely expensive. Study in U.S. several years of Xu Kai Feng said that because the United States in 1983 drew up the medicine development of rare disease can get tax-free, funds to support an etc. policy, currently the United States in small scaled make medicine company gave birth to is more than 70% medicines of rare diseases.In the United States, rare patient the insurance fee that need to pay 1000 more USD than the ordinary people annually, can use any medicine, all expenseses are undertaken by the insurance company.There is all the related law that the rare disease prevents and cures in the United States, Korea, Japan, EU and our country Taiwan regions. Subsidizing the policy will draw up a related representative director of health department to say and truely solve the difficulty of rare patient's and need many sections make a concerted effort,cheap sun glasses in addition to want to raise a rightness of rare patientses a medical treatment guarantee and society to help and also want to work well a rare disease particularly an item science research and drugs to develop a work.The health department is considering to bring into part of rare disease gradually 《clinical technique operation the norm is 》with 《 the clinical diagnosis and treatment guidebook 》 , with the diagnosis and treatment of further norm rare disease.The related representative director said that from now on, will gradually raise the difficult crowd's medical salvage level including"rare disease" sufferer.The department concerned strengthens rare sex hereditary disease to make a diagnosis and give treatment to wait to study a work further, and draw up homologous development programming and pecuniary aid policy, make a diagnosis and give treatment to the rare disease of foundation research the inclination pecuniary aid that the establishment correspond measure.In addition, in registering drugs will also have the initiative an approval under the certain condition registration. A good news BE, Shanghai has already hoped to aim at the rare hereditary disease that the several with no medical guarantee currently can defend to cure, builds up a kind of medical guarantee mechanism and works out these patient's treatment problems currently.China kind head quarter rare disease salvage office performance director, Huang Zi Heng, say, "this has the meaning of milestone to whole country."She reveals that Peking and Guangzhou also under way the survey of rare patient circumstance.
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