The deputy to the National People's Congress appeals for setting up and succouring the rare disease patient's mechanism

The deputy to the National People's Congress appeals for setting up and succouring the rare disease patient's mechanism
Www.xinhuanet.com Beijing 3 Cable of the 5th of moon (reporter Wang ShengZhi) "It is beset with difficulties that the rare disease patient makes a diagnosis, the expense burden of making a diagnosis at ordinary times is heavy, there is no complete rare disease hospitalization cost to pay the mechanism, the society succours and is deficient, research and development, producing, selling links to lack policy support of rare disease medicines. " Deputy to the National People's Congress, Professor of Anhui university strange to say " the rare disease problem becomes a social concern that can't be ignored Zhao Sun, the country should accelerate setting up the succour mechanism of this colony to the rare disease patient. " World Health Organization defines rare disease as the ill number of people and accounts for disease between 0.65�� - 1�� of total population, there are 5000~6000 kinds of rare diseases already confirmed, account for 10% of the human kinds of Diseases. Strange to say, answer millions of according to the intersection of proportion and the intersection of our country and rare the intersection of disease and patient all kinds of this Zhao Sun, the rare disease patient is beset with difficulties in seeking medical advice, going to school, obtaining employment, raising etc., legitimate rights and interests such as life right, health right,etc. are difficult to ensure, need for more care and succour in the societying. Strange to say 31 -year-old the intersection of Hefei and municipal the intersection of post office and worker Ya Zhang one " the the intersection of law and the intersection of cloth and auspicious disease " for example Zhao Sun ( fabrydisease) Patient, begin to have illness coming on at 4 years old, is made a definite diagnosis of " law cloth auspicious disease " 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, it metabolizes obstacles, organs to be depleted and four limbs pain and jeopardize the life vigorously all over. In 2003, developed a new medicine abroad, this kind of enzyme became and treated and cured " law cloth auspicious disease " in place of medicines Specific means. But because there are not rare disease medicines at home to import the landscaped roadway, have not introduced this kind of medicine yet; And if accept this kind of enzyme is substituted and treated, spend 1 each month outside the border. 4 ten thousand dollars, and this kind of medicine was not listed in the medicines catalogue of the medical insurance, the general family is unable to bear. Because can not get and treat effectively, Zhang Ya is not developed quickly by the condition, and uremia appears, had to carry on renal transplantation in 2006, life was very painful. Strange to say a lot of country or region establish relevant organization now Zhao Sun, make the special laws and regulations, to ensure the rare disease patient's health rights and interests. Our country has progressed to some extent in succouring the rare disease patient in the past two years, but still lack the complete mechanism. At present, rare disease diagnosis and sift, check difficult, most hospital lack essential checkout equipment; The current basic medical insurance system has not fully considered rare disease patient's interests, it is difficult to solve to treat the expenses to the ill; Because there are relatively less patients, the market demand of rare disease medicines is narrow and small, domestic pharmacy enterprises are profitless, there is no support on policy, cause the rare disease medicine and develop, introduce, produce etc. to nearly nobody shows any interest in, it is difficult to solve domestic rare disease medicines to produce and lag behind and import the state of rare disease medicines with extremely high price seriously. Sun Zhao's strange suggestion, it is a domestic " rare disease " as soon as possible With " orphan medicine " (another name in foreign countries of rare disease medicines) Make science to define, establish the foundation for making and implementing rare disease to succour the policy; Set up the rational one as soon as possible " Rare disease " Treat sum " Orphan medicine " The expenses are paid the mechanism, solve the rare disease patient's hospitalization cost problem multi-level and multi-channelly, let them think highly of the disease, afford to use medicines, will realize as soon as possible the disease will be cured to some extent; Introduce rare disease treatment medicines actively, guarantee a patient can be treated and cured at home in time, further issue the support policy, enlarge and strengthen our country's rare disease medicines industry; Succour rare disease and list in legislation programming or supplement the relevant regulation, offer legislative authority for ensuring their every rights and interests, promote our country's harmonious social construction.

|