China will make the rare disease patient's subsidy policy Improve and ensure competence

China will make the rare disease patient's subsidy policy Improve and ensure competence
The rare disease boy's cube is interviewed by reporter at home slowly. It is a group of dagger-axe that staff reporter Wang HaiXin takes a photograph of them to thank a disease patient, survives, lives only by the medicine of the subsidy of a company of foreign countries. When this company meets the production predicament delays helping, in the torment that they fall into the illness, some people are critically ill. Dagger-axe thank disease only one in the the intersection of nearly 6000 kinds and rare disease. There is not a therapeutic medicine at home, purchase the extremely expensive, most rare disease number of medicine from foreign countries not to bring into the medical insurance system, this is the predicament that rare disease patients generally meet. Yesterday, the relevant persons in charge of Ministry of Public Health said, would make the corresponding slope subsidy measure as to the basic research that rare disease made a diagnosis and gave treatment, and will improve and ensure succouring competence with the society to patient's medical treatment of rare disease progressively. Countermeasure rare disease should include the intersection of medical insurance and the intersection of China Charity Federation and Deputy Secretary-general, the intersection of China Charity Federation and rare disease in, succour director Ma GuiLin, say, since 2008, the charitable union puts forward the proposal or motion regarding rare disease legislate to ensure on beginning through deputy to the National People's Congress, member of the CPPCC National Committee two Conferences, in the hope of further promoting the country to bring the treatment of the rare disease into the category of the medical insurance as soon as possible, but produce little effect. Director of research center Wang ChenGuang thinks the hygiene law of the law school of Tsing-Hua University, social economy develops into certain level, it is the responsibility of the government to offer the medical guarantee to rare disease patient, "how much kinds of rare disease include in, ensure range, protect get any intensity, can launch progressively according to government's financial resources, but the prerequisite is to need to bring this colony into the medical security system. On this, the government should take the positive attitude. " Wang ChenGuang says, brings rare disease into the medical security system, it is not to do the package method, can move forward progressively. A lot of rare disease to have no idea treatment now, " government can well have the intersection of way and treatment, rare the intersection of disease and number that can treat include security system in first, offer essential medical guarantee and economic aid to rare disease patient. " He proposes, the place with financial capability can bring rare disease into the local medical insurance range, needn't wait for the nationwide legislation to come out. Xu KaiFeng proposes too, the related departments can the certain amounts of following diseases bale the morbidity in unison, list the catalogue, include every administration of rare disease in the medical insurance wholly, submit an expense account. " lucky " Patient Dings 22 -year-old high in stature,one of glasseses worn. He is a junior of department of economics of University of Business Economics of capital now. Mother Zou WeiPing clearly remembers, the man was made a definite diagnosis of the disease for the dagger-axe and thanked at the age of two in 1990 slowly. Dagger-axe thank disease one rare disease, will cause the intersection of patient and the intersection of liver and splenomegaly, skeleton pathological change, if does not treat causing development to be slow, deformity all one's life even dying. In 1990, thanked only 2 disease patients for the dagger-axe of the record of Beijing on the regular payroll. "The doctor says that does not have medicine that can be cured at all at home, let us go home etc.. " Big duckweed Zou ask someone, go national library consult rare the intersection of disease and materials, oneself miss information any at the newspaper either. In 1994, she saw a company of U.S.A. produced and can treat dagger-axe and thank disease for disease's medicines from newspaper, run to ask the American embassy to help excitedly, the connection has reached this company. "The fax that the other side sent over says, the price of a medicine is 1480 dollars, Ding Ran's dosage is one month and 5 medicines. " The monthly salary at that time of Zou WeiPing is 300 yuan, the unit had offered more than 300,000, she has gathered together 150,000 yuan to buy medicines to this company the money. All the time in 15 days, she will receive the fax of the other side's company, says medicine has been sent. "I will not forget, I do not sleep all day, stroll about at home in all one's life in those suffering of 15 days. 150,000 yuan, it was a sum of huge sums of money at that time, but was even if deceived, I wanted to try. " WeiPing Zou say the intersection of man and less than one year such as drug therapy slowly, stomach very, the joint did not ache on one's body, also can move about, go to school just the same as normal child. Zou WeiPing thinks men are a very lucky child slowly, " very lucky, he has medicines that can be managed at least. So long as the child can live it is hopeful to come down. " She thinks, medical science is developed, domestic maybe can produce this kind of medicine too later, the child can be really cured then. Dagger-axe thank the intersection of disease and patient need, use medicine all one's life, otherwise disease will recur. The end of 1996, big the intersection of duckweed and money in the hand Zou already use up, has also borrowed the debt of more than 200,000 yuan, really hard to carry on, Ding Ran's medicine has to break. Disease recur than before this serious, " arthritis can walk terribly, I can only lie in bed all day, think I will die soon. " Ding Ran remembers. But just in the meantime, the production company of this medicine - -U.S.A. good for the intersection of Zambia and Company begin dagger-axe thank disease patient for disease patient's free succour in China, lucky to come to the cube slowly on one's body again, he becomes one of the targets helped. Since 1997, Ding Ran will receive the medicine that the other side's air transport came over every three months, during the last ten years never disconnected. Because the medicine treated, for the injecting type, every two weeks, Ding Ran will inject the medicine once. "Having injected into a kind of habit, I will forget oneself is sick sometimes. " In these more than ten years, Ding Ran thinks that have no too great differences with others by oneself, he studies just the same as normal child, has been also admitted to a university. In July of 2009, make the man with deep impression slowly. He finds unexpectedly the ever punctual medicine has not arrived at all. He and responsible for the intersection of China Charity Federation and rare disease that medicine release succour office, get in touch, learn, U.S.A. is strong in Zambia Company because produces predicament, medicine production reduces greatly, the aid medicine provided for China has to suspend too. The reporter searches for finding, this company still faced being purchased for a time last year on the net. It is more than one year that this one stops, disease five or six times of criminal Ran of the man during this time. "Ache in the bone, insufferably painful, getting ill will ache for more than 20 days each time, getting more terrible time by time. " Such violent pain lets the man realize slowly that can really become a normal person by oneself. Like Ding Ran, 130 more than of the whole country accept dagger-axe that medicine help thank the intersection of disease and patient stand, park agony that bring behind the medicine. Have medicine difficult for awkward more thanth dagger-axe that manage to thank disease patient for disease patient's and park the medicine crisis to keep sustaining until recently, can solve. The rare disease of China Charity Federation is succoured Huang ZiHeng, executive director of office, and said, because enterprises have not extricated oneself from a plight yet, should ensured the global other places to purchase using medicine of the medicine patient normally first, so only resume supporting medicines partly now. Because the medicine is limited in quantity, " can only ensure patients of children and already critically ill patient first. " Because is serious after the recurring, Ding Ran received in the near future and can maintain the medicine for 2 months. These more than 130 dagger-axe will be thanked in the future How is patient's destiny of disease? No one knows. U.S.A. good for Zambia Company general manager Zhao Ping of district tell reporters, the company has helped more than 300 patients in the whole world altogether in China, in China the intersection of patient and number largest, medicine that help quantity even most loud, but the company meets the predicament now, "we are unable to help for a long time, only the gentleman exist, could discuss community responsibility in enterprises after all. " Zou WeiPing still remembers, when she sought help everywhere for Ding Ran's disease in the 1990s, almost no one can understand what disease she talks about, explain for a long time to them. "Carrying to rare disease in the society now much stands up, but Ding Ran's life did not still have any change, "be alive by donating medicines " . More thanth dagger-axe that charitable union succour thank disease in the patient at present, the majority is the rural patient. Because dagger-axe thank disease include national the intersection of medical insurance and system in yet, patient in the project to accept, present medicine while being charitable at present, but if donate the project to stop one day, their treatment expenses will be a social concern. Have predicament that medicine can manage in fact, China Charity Federation, when strong in Zambia Company to sign medicines and help the agreement with U.S.A., there is worry. "We thought at that time, the light was succoured a patient too by enterprises and did not insure. Once enterprises close or manage improperly, the patients will have no door to seek help, will wait for the death of their having only. " China Charity Federation Deputy Secretary-general, the intersection of China Charity Federation and rare disease succour director's rough your forest, say to the staff reporter, but because has not treated dagger-axe and thanked disease for disease's medicines at home now, the charitable union is still a medicine aid project of accepting this company finally. "Including dagger-axe thank the intersection of disease and rare disease inside, genetic disease, one risk as to everybody, it is a public problem. " Xu KaiFeng, expert of BJ Union Hospital, says. It is reported, everybody will have a few flawed or damaged genes on one's body, if spouse's flawed or damaged genes of both sides are knocked into together, rare disease may take place. How many rare disease patients does China have on earth? According to definition of World Health Organization, there are 5000-6000 kinds of rare diseases already confirmed in the whole world, but only 1% of the rare diseases can be treated at present. The morbidity of the rare disease is between 0.65�� and 0.1��, according to this proportion, all kinds of rare disease patients of our country are up to ten million at least. "The rare disease patient's key has no medicine. " Porcelain baby's patient, porcelain president of baby's association Wang YiOu say, baby's patients of the porcelain do not have any kind to define the medicine to the ill with indication now. "But it is rare in each be be found, treated if disease patient early earlied,he can lives the same as normal people, the destiny of all one's life will be different. " Permanent introduction of succouring son Huang, executive director of office to the rare disease of China Charity Federation, our country has not made special rare disease management and medicine management system yet at present. Though the rare disease kind is various, patients have less number, the input of research and development is enormous, domestic at present to scarcely specially treat the medicine of the rare disease, a lot of medicines are introduced from foreign countries, the price is extremely expensive. Xu KaiFeng who has studied in U.S.A. for many years said, because U.S.A. made the rare disease medicine and researched and developed and obtain policies such as duty-free, financial support,etc. in 1983, the medium and small-scale drugmaker of U.S.A. has produced over 70% of the rare disease medicines at present. In U.S.A., the rare disease patient only needs to pay more premium of 1000 dollars than common people every year, can use any medicine, all expenses are undertaken by the insurance company. Relevant law that U.S.A., South Korea, Japan, European Union and Taiwan of our country have rare diseases to prevent and cure. The subsidy policy will be made to the relevant person in charge of Ministry of Public Health to say, should really solve the difficulty of the rare disease patient, need many departments to work in concert, except should improve and ensure succouring with the society patient's medical treatment of rare disease, also do rare disease special scientific research and medicines research and development well. Ministry of Public Health is considering that includes some rare diseases in " clinical technological operation regulation " and " guide to the clinic diagnosis " progressively, in order to further standardize the diagnosis of the rare disease and treat. The relevant person in charge says, in the future, will improve and include " rare disease " progressively Medical rescue level of the patient difficult masses inclusive. Research work of making a diagnosis and giving treatment etc. that the related departments further strengthen the rare hereditary disease, and make the corresponding development plan and subsidize the policy, will make the corresponding slope subsidy measure as to the basic research that rare disease makes a diagnosis and gives treatment. In addition, in medicines are registered, will sanction registering under certain condition preferably. One good news, Shanghai expected to have several kinds ensured in medical treatment can prevent the rare hereditary disease that can cure from at present at present, set up a kind of medical security mechanism, solve these patients' treatment problem. The rare disease of China Charity Federation is succoured Huang ZiHeng, executive director of office, and said, "have a meaning of the milestone for the whole country. " She reveals, Beijing, Guangzhou is carrying on the investigation of the rare disease patient's situation too. Edition this interviews and writes staff reporter Chen Qiao in the leaf continent

|