'Government Must Help Rare Disease Patients'

The legislator representing the medical sector has urged the government to push the pharmaceutical industry to cut the cost of drugs for rare diseases - often termed "orphan drugs" in the medical community.

Pierre Chan also complained that the HK$500 million earmarked for subsidising patients who need expensive medicine for such diseases is not enough.

Speaking on RTHK's Letter to Hong Kong, he said: "Five hundred million Hong Kong dollars is simply not enough when the prices of orphan drugs continue to rise.

"As part of his speech of the State of The Union address, President Donald Trump named tackling the injustice of tackling high drug prices a top priority for his administration in 2018.

"Likewise, our government should also show its determination to demand that the pharmaceutical industry brings down the cost of orphan drugs in order to alleviate the financial burden of the rare disease patients and their families."

Rare illnesses have gained prominence since a woman suffering Spinal Muscular Atrophy petitioned the Chief Executive, Carrie Lam. The genetic disorder affects the nervous system and takes away a person's ability to move and even breathe unaided. Lam promised to "personally" oversee efforts to ensure local access to the drug.