Health: a rare disease of vision care shouldn't fade out

Yin Weiguo (citizens)

Source: health

        The first Beijing academic conference of the rare disease spread information, nearly tens of rare disease in our country, they face a high misdiagnosis in diagnosis, medication is difficult to use your dilemma. The Beijing times (February 25)

        Nearly thousands of rare disease is not a small number of patients suffer in pain at the same time, also be heavy medical overwhelmed. Rare diseases drugs in China basically rely on imports, the price is expensive, medicare will not be reimbursement, health care medicine directory in China at the present stage of mainly aimed at the common diseases and serious illness, drugs for rare diseases are not included in the calculation. "To eat medicine" as many rare disease pain call, some patients can only reluctantly gave up treatment, even die at home.

        Treatment of rare diseases need special protection regulations and policies. Is reported that many countries make for rare diseases and law and regulations, for the rare patient access to medical aid and social security has provided a legal basis. Obviously lags behind in our country, our country "drug administration law, the law on the prevention and control of occupational diseases, etc. All of the health laws and regulations are not rare disease, safeguard the rights and interests of rare disease medical experts are calling for legislation as soon as possible. In February 2009, porcelain doll rare disease care center five rare disease group solicited proposal calls for legislation for rare diseases as soon as possible, the two network signature, but has not yet been 4 years now authorities responded positively.

        Relative to the common and rare diseases is one of the few, but thousands of patients is not small number, and as many as 6000 rare diseases, have enough reason to get government and social concern. Current health insurance in China has basically covering a population of 1.3 billion, universal health care is missing rare diseases is a big loopholes and defects. Rare diseases is one of the few people, but can't fade out some kind of a minority government concern of the people's livelihood view, building a harmonious society need to pay attention to and care for each individual the livelihood of the people, safeguard rare disease medical assistance rights is the topic of meaning.

        First of all to invest more in improving rare diseases diagnosis and treatment conditions. For rare diseases prevalence of various diseases is less, hospital is the lack of corresponding testing equipment, also lack of technology and experience, most of the rare disease cannot be confirmed for a long time, even misdiagnosis, missed diagnosis, the hardware and software are backward situation needs to be improved. Secondly to speed up the research and development, the production of rare diseases treatment, change the status quo of drugs had been. Now the catalog of medical insurance drugs to treat rare diseases not included, one important reason is that these drugs mainly rely on import, the price is expensive, health-care bill won't be able to absorb. And once you have the Chinese medicine, the cost is greatly reduced. Third to will enter rare diseases medicine supplementary medical insurance directory as soon as possible, while also concerned about rare diseases other survival and people's livelihood.

        The escort is inseparable from the state policies and regulations, need financial increased spending on health care.

The original links: http://www.jkb.com.cn/htmlpage/35/355367.htm?docid=355367&cat=0K&sKeyWord=null