It is a hemophilia patient " The life of continuing a journey "

It is a hemophilia patient " The life of continuing a journey "
Www.xinhuanet.com Tianjin April 18 special despatch ( Reporter Ni YuanJin) " take active action and make great efforts in the theme to realize everybody enjoys and treats " 22nd " day of hemophilia in the world " While coming, the reporter learns from the national hemophilia case information administrative center, China has already sent 7980 hemophilia cases. This system will be devoted to gathering the case information of hemophilia in all parts of the country, will offer the full and accurate data for the fact that the country will make hemophilia to prevent and cure, ensure the policy. It is the most basic symptom that hemophilia spontaneity such as a kind of hereditary blood coagulation and function obstacle disease, the joint, muscle, viscera bleeds. Because of lacking the blood coagulation factor, the patient is difficult to arrest blood by one's own function, can jeopardize the life. Hematoma that the bleeding position is formed can be caused and organized symptoms such as necrosis, peripheral neuropathy becoming, joint deformity,etc., lead to the fact finally the normal activity is limited. The clinical experts of doctors and nurses of the hemophilia field of China point out while giving an interview, the country treats the policy support, pays close attention to the fact to hemophilia efforts is promoted by a wide margin in recent years, but the factor expensive and shortage of medicine of blood coagulation is still to treat the difficult point. It is the most effective medicine to treat hemophilia that the medicine expensive and difficult realistic blood source blood coagulation factor medicine, gene to ask recombinate the factor medicine of blood coagulation. 2009, China go through blood coagulation eight the intersection of factor and extreme shortage storm once; The gap of using medicine of the rescue center of hemophilia is relatively relieved comparatively at present, but blood coagulation factor the intersection of medicine and total supply remain unchanged, satisfied with a patient and treat need while being difficult. National hemophilia cooperates group's group leader, thrombus of hospital of blood disease of Chinese Academy of Medical Sciences are styptic to make a diagnosis centre director benevolence professor Chi Yang points out while giving an interview, "the patient can't obtain necessary medicine, medicines price to go beyond patient's ability to take the burden at any time, it is two difficult problems that the hemophilia patient faces for a long time. " According to the intersection of benevolence and the intersection of pool and introduction Yang, 2 eight factor needed minimum to prevent from the dosage calculate according to each every day such as weight, necessary blood coagulation factor medicine of every year on the premise of not bleeding of an adult patient 50 kilograms in weight 3 6 5 0 0 A unit. Calculate according to the intersection of per unit and the intersection of blood coagulation and 3 of factor, one year minimum the intersection of expenses and about 12 Wan. The so-called prophylactic treatment, it is to inject the factor medicine of blood coagulation before bleeding. Such therapeutic way can go on in family, can prevent joint, the intersection of muscle and the intersection of limb and out of shape deformity and viscera to jeopardize life caused to bleed from bleed effectively. The research of BJ Children's Hospital shows, the joint at the beginning at the age of 3 to 6 of about 80 of hemophilia patients bleeds, 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. In addition, it is up to 9 5 in children especially to produce serious anxious and depressed mood because frightened to bleed. 6 % . If does not adopt injecting the prophylactic treatment of the factor medicine of blood coagulation every day, a lot of infants will be unable to go to school because of facing bleeding at any time, can't go out to participate in physical training, then cause calcium deficiency, amyotrophy, and increase the joint and shoulder a heavy task. Only 4 producers have qualification for producing source eight factor preparations of blood at present in China, 40 ten thousand bottles (routine 200 units of each bottle of annual production in 2010) ,Or 8000 ten thousand units. According to international epidemiology being ill to lead, 10 calculate to 20 people / 10 people Wan patient of Chinese hemophilia about 10 more than people Wan in hemophilia. "Minimum dose can only maintain the life, if should obtain the physical and psychological state equal to normal people, factor demand is 3000 units every year for per kilogram of weight at least, this will be the great amount of expenses for medicine of hundreds of thousands. " China hemophilia treat, cooperate the intersection of group and the intersection of pediatrics and the intersection of group and person in charge, the intersection of Capital University of Medical Sciences and subsidiary the intersection of BJ Children's Hospital and the intersection of hemophilia and the intersection of in the center and Wu RunHui Professor say. According to the intersection of benevolence and the intersection of pool and introduction Yang, in order to guarantee blood product's security, China still carries out " notice on forbidding importing blood products such as 8 factors,etc. " that Ministry of Public Health and General Administration of Customs released of 1986 strictly at present, besides some human blood albumins, the other blood products of nonimportation. In addition China pursue the intersection of blood product and the intersection of raw materials and blood plasma " quarantine one " for safe purpose from January of 2008 The system, the blood plasma should be preserved in the manufacturer for 3 months, produced again. It is reported, source eight factor medicines of blood are produced and must be put into blood plasma, and Chinese blood product raw materials, basically in order to offer the thick liquid with compensation, the plasma pheresis is not enough to cause the blood plasma of raw materials insufficient in supplily to be main reasons of the hemophilia medicine in short supply at present. " hemophilia is expensive ' rich man's disease ' of expenseses in the relays from all walks of life of life of continuing a journey, even if is in the developed country, if there is no aid of government, social security, charity organization, the patient high disables rate, height mortality equally too, life quality is low. " Wu RunHui says. 16 -year-old patient, hemophilia of Tianjin, pull luckily ' Assumed name) Have been forced to suspend schooling because the joint has bled, and face the disabled danger. At the beginning of 2010, are preparing pulling obtaining " China Charity Federation visits department's strange hemophilia aid projects of children " luckily of the high school entrance examination Medicine succour. June of 2009, China Charity Federation and Bayer A.G. are in Beijing, 23 cities of China such as Tianjin, Shanghai, Guangzhou, Shenzhen launch the charitable activity of large-scale medical treatment of succouring hemophilia children, 2 help in 18 years old and severe the intersection of hemophilia and patient present into the intersection of recombination and the intersection of blood coagulation and 8 factors for three month, visit the strange medicine of department free, in order to reduce the joint to damage, avoid disabledly, improve the infant's life quality. In July of 2010, the aid projects of children of hemophilia will be started again. The charitable association's statistical data of Tianjin reveal, this aid project has benefited 32, hemophilia patient of Tianjin area altogether over the past two years, aid, present medicine the intersection of total value and 33 over yuan Wan. The Chinese blood friend's committee member of home executive committee, hemophilia 43 -year-old Wang Lixin, president of union in Tianjin express while giving an interview, China's hemophilia patient's condition of making a diagnosis is promoting constantly in recent years. Wang Lixin experience personally input blood plasma, cold precipitate, blood source eight the intersection of factor and medicine, gene recombinate eight the intersection of factor and the intersection of medicine,etc. and therapeutic medicine and improvement of way, he is devoted to popularizing the prophylactic treatment of hemophilia at present. 2006, 30 Wan European dollar's " promise and Noda's hemophilia fund project " Start, in Shanghai, Beijing, Tianjin, Hefei, Guangzhou, Jinan 6 cities, devoted to carrying on knowledge to hemophilia popularize, sifts checking, registration and works, 6 medical workers that and the subsidy comes from 3 medical organizations in China go to the free hospital of imperial family of London to receive a training, train 330 doctors, 89 nurses and 65 technical staff in laboratory. Since 2008, provinces such as Beijing, Shanghai, Tianjin, Guangdong, Jiangsu, Zhejiang, Guizhou, Yunnan,etc. successively included hemophilia in the medical insurance to submit an expense account in the range already. " Adult of Beijing urban area the intersection of hemophilia and worker patient on-the-job can offer 85, retired patient and can offer 90, patients of children and can offer 70. However, in some under-developed areas, hemophilia has not entered medical insurance to submit an expense account in the range yet. " Nurse of BJ Union Hospital hematology Li KuiXing says. Will it be January 2010, Ministry of Public Health announce in set up provincial the intersection of hemophilia and the intersection of message and the intersection of registration and in the center while being national, the norm is diagnosed and treated, and include the comprehensive care of hemophilia treated in medicine, surgery, attending to, physiotherapy, recovering and psychology,etc. to the patient. By April 14, 2011, the hospital of blood disease of Chinese Academy of Medical Sciences located in Tianjin is regarded as the national hemophilia case information administrative center, have already collected and gathered 7980 cases of information national hemophilia patient's cases. How " if enough blood coagulation factor medicines are supported far the treatment ensures the road, the hemophilia patient is the same as healthy people. " This is clinical experts of doctors and nurses of hemophilia while interviewing to reporter's repeated concept constantly. The intersection of benevolence and pool Yang think Russia treat to the intersection of hemophilia and charge free that patient implement from the 2010, can be regarded as the direction in which the efforts in the future in China realize. "Hemophilia is treating and investing one, life to extend one point of diseases, set up national hemophilia case information management system final purpose, hope, can make patient of Chinese hemophilia quantity and condition clear, how many blood coagulation factors does it need, offer the basis while making the hemophilia policy it to the responsible institution of the hygiene. " The intersection of benevolence and pool Yang say. Wu RunHui thinks, public cognition, medical group, social security are that hemophilia patients obtained three important prerequisites treated effectively. One sponsor by charity organization, prevent from feedback tried to treat reveal by result while being low dose of in that 15 hospital launch 6 week, the patient or family of 40 does not accept very much " Prevent from treating " , patient of 33 unable to tolerate, input the intersection of blood coagulation and factor repeatedly every day and 3 the intersection of old brand and the intersection of hemophilia and rescue center finish event for 6 weeks only. "Already the meeting an urgent need type is treated to the prevention before bleeding to treat as required since bled for the idea with therapeutic hemophilia in the world, in order to joint pathological change of the person who prevents future trouble of bleeding, so it treats the prerequisite effectively to improve the social cognitive intensity, "RunHui Wu say " centre and more hospital set up the intersection of hemophilia and medical group, raise social security efforts very much crucial likewise in make a diagnosis by a young one. " It is reported, the aspect of state policies has already been allowed to allocate the surplus raw materials that can produce the blood coagulation factor from the blood coagulation factor medicine in the blood product manufacturing enterprise outside 4 of qualification enterprise at present, can produce in order to increase source eight factor preparations of blood. "The aspect of state policy has been already rational day by day, but it still needs relevant enterprises to give up trending towards the profit to allocate the course specifically, offer the hemophilia patient more support. In addition, set up hemophilia and register one of the original intention of the centre and hope to make the policy that hemophilia prevents and cures in order to assign production target and country to the manufacturing enterprise, including policies such as the medical insurance,etc., offer the full and accurate data. " The intersection of benevolence and pool Yang say.

|