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Seven-year-old Hong Kong boy with rare disease still waits for drug treatment as payment debated

After two years of waiting with little hope in sight, a seven-year-old Hong Kong boy will continue to suffer the unbearable conditions of a rare disease that gave him a bell-shaped chest and deformed wrists and legs, unless he gets subsidised access to an expensive drug on a long-term basis

A drug treatment that costs more than HK$2 million a year is Xiao Hiu-chun’s only hope to stop his condition from deteriorating due to the lack of a specific enzyme in his body.

But his hope remains distantas the city’s public hospitals have failed to strike a deal with a manufacturer on how to split the drug’s large financial cost to make it more affordable.
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