Rare disease has not been paid attention to enough yet The administration should include in serious disease and succour

Rare disease has not been paid attention to enough yet The administration should include in serious disease and succour
It is reported at present, the mechanism of prevention and control of infective disease and common chronic disease of this city has been already complete day by day, medical treatment ensures covering population to expand progressively. But prevented to rare disease of very low morbidity among the crowds from, made a diagnosis and gave treatment and medical treatment has been ensured not paying attention to enough yet. Yesterday, deputy to the National People's Congress of the city, Wang LiYing of the district hospital of Changping proposed, this city should set up pre-natal diagnosis and hereditary referral centre of the rare hereditary disease in the tertiary hospital as soon as possible, and include the administration of rare disease in serious disease to succour the range to consider.
Wang LiYing tells reporters, 80% of the rare diseases are caused by hereditary defect, most of patients are distributed in poorer countryside and remote area in medical knowledge, several per person have a certain rare the intersection of disease and existence of patient in the common family, they because unable to diagnose and intervene, cause serious the intersection of health and deformity in time not merely, the family is pregnant with one and another rare disease patients because of idea of leaving things to chance too.
"Whether can strengthen the intervention with early it as to this city of these rare diseases, and make it get medical rescue? " Wang LiYing says, such early intervention is possible. As far as Wang LiYing know, at present, the technology of pre-natal diagnosis that medical organizations such as BJ Union Hospital,etc. have the zymologies and genes of more than one hundred kinds of rare hereditary diseases that are diagnosed,etc., and launched the antenatal work of consultation of some rare hereditary diseases, but not popularized these feasible pre-natal diagnosis technology in the conditional medical organization of the whole city yet, health authorities have not organized making the unified expenses standard to the technology of pre-natal diagnosis either.
Wang LiYing introduces, only Shanghai takes the lead in proposing setting up the basic medical security mechanism of rare hereditary disease now nationwide. She think Beijing walk forefront in the whole country while being necessary too as capital, bring this job into the agenda.
She advises Municipal Bureau of Civil Affairs to include the administration of rare disease in serious disease and succour the range to consider, and encourage enterprises to use certain proportion of the income of every year for the public service, managed and coordinated and used, can use a part among them for medical rescue and set up special relief fund with the local civil affairs department in unison by the central authorities, used in succouring the crowd that the national medical insurance still can't cover, including rare disease patient, in order to solve treating the expenses all or partly of the rare disease patient. In addition, propose to already there is a law that has revised or drafted the new law (such as the society succours the law)ing When, strengthen to the intersection of medical rescue and subdivision of range, list rare disease in, reach, succour among the the range.

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