There are 80 000 hemophilia patients now in our country Only a thousand people can insist on treating

There are 80,000 hemophilia patients now in our country Only a thousand people can insist on treating
There are 80,000 hemophilia patients now in our country Only a thousand people can insist on treating
Blood coagulation factor as grain,so long as can supplement in time,blood friend patient can life like normal people Hemophilia treatment: Difficult to diagnose and treat competence to be low in money and the intersection of medicine and our country, blood friend under the age of 14 to 50% appear the disability patient have, 90% present the disability over 18 "Mum,it please don't block it I / let by I run going,let me not run /run wanting I,run I heartily /experience I by pleasant sensation heartily while running wanting! " This is one of hemophilia children's cries. Run, play These very normal things, in hemophilia eyes of children, have become a kind of extravagant hope. Someone says, " God has forgotten a group of data " (blood coagulation and factor deficiency disease) ,They " come to human world hurriedly " . To hemophilia children, from first day when was born, the misfortune begins to follow: Often bleed repeatedly, a small wound will let their blood flow be incessant; Stand pain different to describe, even dysarthrosis every day "Does not know whether it is appropriate to use this rare word, the average proportion of hemophilia in the whole world is 15/100,000 to 20, fewer than 1/10000 at home. Just I get the winning number in a bond. " A hemophilia patient insisting on anonymity says. One weekend, he and child in the compound make an appointment in the morning of next day to go to the park together, but ache, wake up at midnight, the intersection of knee joint and getting swollen steamed bun that the picture just came out of steamer, can only lie in bed trembling. Book Qi is 7 years old this year. Because of suffering from hemophilia, his left knee joint is swollen as the adult, can't already walk normally. This likes drawing and lively child that sang, study at 6 years old, time is 36 days in the school altogether in grade one, the second grade can't have returned to the classroom yet. Spend his most days on the bed at home. Have illness coming on, he move, sit get balcony chair, watch big tree, car of outside dull. While suffering from hemophilia son's joint and bleeding, so painful as to be half dead and half alive, a mother whose surname is Chen holds children to go to the 7th floor windowsill. The instant that she planned to jump down, it is born the sob and said that the son was strong suddenly: "Mother, I do not ache. " Hemophilia is the hereditary bleeding disease that a kind of shortage because of some blood coagulation factors in blood produces the serious blood coagulation obstacle. The most common first type hemophilia, account for 85% of the inborn bleeding disease, all because the blood coagulation factor is scarce to cause. Hemophilia is that men have illness coming on, women's transmission. After ill men and the normal women are married, daughters given birth to will carry the pathogenic gene; Women who carry the pathogenic gene marry normal man again, it is ill that boys given birth to have 50% possibility, the girl has persons who carry that 50% possible continuation becomes the pathogenic gene, then transmit disease to her future generation. The joint bleeds, it is one of the most terrible symptoms of hemophilia. The joint bleeds repeatedly, it is a main reason disabled. Wound, long, sport of walking cause the slippery membrane to bleed in a moment, but bleed the risk caused may influence body each organ. Most hemophilia patients in our country are damaged and cause the deformity by the joint, lose study and labour capacity finally. According to calculating, there are hemophilia patients about 80,000 people now in our country, register 5000 patients, can insist on only about 1000 people that treat now. Because of diagnosing and it is low to treat competence, a large number of patients have not been diagnosed yet and found. Patient, friend of blood, survive on average age 14 year old probably, under the age of 14 to have, 50% appear the disability probably, 90% of having over 18 present the disability. The coverage rate of the medical insurance is low, the low competence of submitting an expense account, in addition, the society succours the shortage of funding, hemophilia children's colony survives difficult hemophilia has not radically treated the method at present, but so long as adopt and substitute and treat and inject the blood coagulation factor, patient's all right normal life. "Unless there are as grain on blood coagulation factor, so long as can supplement in time,blood friend patient can life like normal people. But the most key one is that two is clicked: Money and medicine. " Qian ZhongMin, director of China Charity Federation project department, says. There are medicines that can not be afforded, it is the greatest problem that the patient of our country faces. Want, prevent the intersection of hemophilia and patient from appear the intersection of limb and deformity, need, pay yuan of therapeutic expenseses every year. The book is checked friend's disease of bleeding in 3 months in Qi, got 7 years old ago long, mother feels " spends money like the flowing water " ,The family has been already on the line in abject poverty. Mother quits job and looks after him at home specially, the monthly income of the whole family is less than 3000 yuan, have already owed the external debt of more than 100,000 yuan. Friends and family often push out of the money, help them to fill out this " bottomless pit " . The situation of the book Qi is the portrayal of most hemophilia patient's families. Because lack the money, even lack essential relevant science knowledge, more than 75% of the patients have not got enough treatment. Qian ZhongMin says, hemophilia is a rare disease, a lot of doctors do not know this kind of disease, result in misdiagnosing and leaking the examining rate higher. Even if is the big city, there are few professional rescue centers, the special medical team is very weak. Clear patient for diagnosing, because the coverage rate of the medical insurance is lower, the low competence of submitting an expense account, in addition, the society succours the fund more scarce, it is very difficult for hemophilia children's colony to survive. According to the data of the alliance of hemophilia in the world, the total consumption divided by population of blood coagulation factor of a country, the number value received can reflect the hemophilia patient receives the therapeutic intensity. The number value 1 is a pass line, the American-European number value of developed country is general between 5 and 6, and the number value of China is less than 0.2. Reach the pass line, will take 1,300 million units of blood coagulation factor in Chinese New Year. Produce peak period 2004 in blood product, domestic the intersection of factor and annual output but 40 million to 60 million units. Without medicines, know to live is no better than to die. From 2006, because blood plasma raw materials nervous, freeze, be the intersection of people and the intersection of blood coagulation and factor medicines, present shortage as to a cheap one, a lot of places even give up medicine. Block the barrier on the hemophilia children's road to seek survival, is far above these. What more than 90% of the patients in our country accepted are ways of the cold-blooded precipitating and simple blood transfusion thick liquid. But the new blood thick liquid can't adopt the virus to deactivate technology, because once deactivate, the effective composition in the blood will lose utility. Chinese Academy of Medical Sciences haematological the intersection of research institute and the intersection of benevolence and pool Yang regret to say whether this way can cause disease to travel, the key lies in checking the blood plasma provider strictly. Even increase a lot of detection ways, can't guarantee 100% of the security of provider either, this is a world difficult problem. In the whole world, people's blood coagulation of blood plasma taking blood plasma as raw materials has generally insufficient in supply factor. In November of 2007, national food medicines supervise the administration bureau examining and approving fast, sanction recombinating people and congealing the blood and visiting the department strangely and is listed on China, hope to save more patient's lives. 2005, our country Freeze and be people and congeal the blood factor to include in the class-A catalogue. In 2009, recombinating people and congealing the blood factor is included in the class-B catalogue of the medical insurance too. Deputy Director of Beijing Academy of Traditional Chinese Medicine Li Ping says, the realistic question is, freeze and be people to congeal the blood factor urgently and scarcely, recombinate people, congeal the intersection of blood and factor, spend, blow. As to blood product, such the intersection of recombination and people congeals the blood factor very as visit department, belong to medicines of the national class-B medical insurance catalogue, even the patient submits an expense account according to 60% of the proportions, a bottle of medicines of 500 units / ml need to pay for itself too to be about 1000 yuans. So long as hemophilia children get enough medicines and regular treatments, can accept the education, grow up healthy and sound like normal child Happiness of Zhang Yuan of child 12 years old from Shanxi, March of 2007 is measured by BJ Union Hospital, make a definite diagnosis of the heavy-duty first type hemophilia patient. He of today, except that the right leg rounds the reshaping device because of the joint operation, seems to have no difference with the healthy child. He can mean playing out the cheerful piano music with flexible pair, holding the writing brush and writing out the graceful calligraphy skillfully. Call upon pool Yang,it if can accept prophylactic treatment, these childrens can well life like normal people. Injected factor medicine before bleeding, only needed 1 bottle each time, and inject after bleeding, may want 6 bottles. One is ill to right away as firing fighting cure here. It is the small fire at the very beginning, perhaps a basin of water can be put out; Wait for fire cook heavy, must a lot of ink could be put out. The intersection of BJ Children's Hospital and research show, 80% about infant joint bleed at the beginning during 3- 6 years old, the patient over 12 nearly all has dysarthrosis, the economic losses caused because of the deformity, in addition, replace the expenses that the artificial joint needs, is well-above the cost of prophylactic treatment. It is obvious, diagnose, it is very essential to treat early early, it is the task of top priority to let more patients enter the regular treatment system. In June of 2009, Bayer Company will set up " China Charity Federation visits department's strange hemophilia aid projects of children " with China Charity Federation together ,Launch the large-scale medical treatment which succours hemophilia children in the whole country and succour the activity charitably. At present, have already provided for 242 infants and succoured, the medicines value donated reaches 5,400,000 yuan. Low insurance families, specially tired infants are all free; Low insurance, specially tired children, local medical insurance wipe out half, project wipe out half. The reporter has calculated an account, under existing medical insurance policy and charitable common help that offers, the infant's therapeutic expenses have already been reduced by a wide margin. In Guangzhou, if hemophilia child participates in the project, the expenses that oneself needs paying are probably 40,000 yuan for each person every year. In Guiyang, the tertiary hospital makes a diagnosis, the annual each person's expenses are 55,000 yuan, but in second hospital, the expenses are only 30,000 yuan. The intersection of expense and difference between the different area, come from regional medical insurance wipe out difference of proportions to the intersection of hemophilia and therapeutic medicine mainly. Long dedicated suggestion Ruan, academician of Chinese Academy of Engineering, to the hemophilia children under the age of 18, must show loving care for ahead of time, the prophylactic treatment of offering as soon as possible. As to developed area, on the basis of ensuring according to needing to be therapeutic, should positive the intersection of union and social forces launch the intersection of children and prevention of patient treat, and will recombinate and congeal the blood factor to include in the catalogue of submitting an expense account of the class-A medical insurance, in order to guarantee the best prevention therapeutic effect. Qian ZhongMin says, charitable aid is put in place in full amount, but the problem exists while submitting an expense account in the medical insurance. Some urban medical insurance can submit an expense account 60%, wipe out into restriction of amount of money. In less than 3 months, the expenses for medicine will exceed standard, as to those difficult families, it is very difficult to guarantee the courses of treatment of 6 months. In order to solve this problem, all parts have launched different attempts and efforts. Xiamen opens up the landscaped roadway in the fixed hospital for the hemophilia patient, let them prescribe to see the doctor in the tertiary hospital, go to community's hospital to take medicines, let infants enjoy the proportion of higher submitting an expense account. In October of 2010, Guangzhou issues the new regulation, cancels the payment ceiling monthly of 4500 yuan of hemophilia, the range is up to more than 70% to lighten the burden. Not long ago, Ministry of Public Health started " administrative system of hemophilia " ,Through setting up the whole country and 31 provincial hemophilia information administrative centers, in order to find out basic information and blood coagulation factor medicine of hemophilia patient of our country to employ the situation, change the low current situation of making a diagnosis and giving treatment rate of hemophilia patient's norm at present. The expert points out, in the developed country, hemophilia, this kind of rare disease, includes in the country and succours the system. Our country might not totally imitate the foreign mode, but the government must bear ultimate liability. Solve the majority through the fund of medical insurance, and then succour and solve the small part through the society, let more infants family extricate oneself from a plight.


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