FIRST AIRED: May 19, 2017

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Transcript

00:00:02
>> New hope for victims of rare diseases in China. Beijing taking steps to help an estimated 16 million of its citizens who need specialist drugs, which are either not approved or not covered by public insurance policies. Eight-year-old Kuku suffers from a rare genetic disorder called TSC. He needs a drug called Sabril to control his seizures but it's really, really hard to find in China.
00:00:26
So his parents have to get it smuggled in from places like Turkey and Taiwan. I'm Reuters Anita Li in Shanghai. One reason drugs like Sabril are not easy to find in China, is because Beijing's health budget is tight and the approval process is long. Specialist drugs for rare diseases are a low priority but that could change.
00:00:48
The Health Ministry's putting together a list of 100 rare diseases to help guide policy makers who are overhauling the healthcare system. That could mean a faster approval process for these drugs in the future. And incentives for pharmaceutical firms to develop more. Campaigners say the system is in urgent need of an upgrade with many patients suffering from rare diseases, simply, waiting to die.
00:01:13
Kuku is one of the lucky ones. But it's still a risky business.>> These medicines are not approved by China's Food and Drug Administration, so the authorities could accuse us of importing fake drugs. But we'll buy them whatever it takes.>> Global sales of orphan drugs are set to hit nearly $210 billion by 2022.
00:01:35
Local firms are now eyeing the market. Some considering jumping in even without help from the government. Meanwhile, Kuku's family's watching developments closely hoping that one day Sabril will be covered by their insurance policy easing the financial burden of keeping their only child healthy.