Orphan Drugs Struggling to Gain Foothold in China.docVIP

Orphan Drugs Struggling to Gain Foothold in China 　　In China， most of rare diseases are still incurable， while drugs for those curable rare diseases， called as orphan drugs， are highly priced. Moreover， there has more than 130 orphan drugs marketed in the country but only 60 of them are included in the medical insurance system. Therefore， most of rare disease patients can’t afford those expensive orphan drugs. 　　According to a survey conducted in 2012， it cost Chinese rare disease patients 6，700 yuanon average for orphan drugs in 2011 and 71% of their families said they cannot afford the bill. 　　Unfortunately， Chinese medical insurance system makes very slow progress to alleviate the tremendous burden on those desperate families who have to pay tens of thousands or even millions of yuan for orphan drugs per year to cure a patient with rare disease. 　　 Profitable but Unavailable 　　In 2014，with the ice bucket challenge going viral， the disease Amyotrophic Lateral Sclerosis （ALS），also known as Lou Gehrig’s disease or Charcot disease， came to wild public notice. Since then， the voice of rare disease patients has been gradually heard by the public. 　　Rare diseases affect only a small proportion of the population， most often at birth or in infancy. According to the World Health Organization （WHO）， rare diseases， also referred to as orphan diseases， are defined as diseases or conditions that affect 0.65%-1% of the whole population， Based on the definition， there are about 7，000 kinds of orphan disease across the world currently with patients totaling 350 million. 　　Due to the low morbidity of rare diseases in China， most of hospitals lack corresponding medical technologies and staff to correctly diagnose such diseases， leading to the frequent incidents of missed diagnoses and misdiagnoses. In some cases， it took a patient with rare disease three to five years to have a definite diagnosis. But what’s even worse is that those patients find those orphan drugs unaff