My Take

On rare but deadly diseases, government is playing God

Hong Kong’s public coffers are awash with cash yet we deny life-saving medication to those most in need

PUBLISHED : Monday, 08 May, 2017, 1:44am
UPDATED : Monday, 08 May, 2017, 1:47am

Senior government bureaucrats are presumably human beings, too. So I assume that’s the case with those in charge of the Food and Health Bureau. But an official response from the bureau about subsidising – or rather not subsidising – drug treatment for patients who suffer from rare diseases makes me question that assumption.

A bureau spokesperson said there was already an established system to assess new medications and whether they were suitable for inclusion on the government’s list of subsidised drugs. In other words, tough luck if the life-saving drug you need is not on the list. According to the bureau, you can always try your luck with some medical charity funds, which may take pity on you.

Our government thinks nothing of splashing HK$194 million to celebrate the 20th anniversary of the handover; HK$5.45 billion to revamp Disneyland; pay HK$60 million to unsuccessful bidders for the contract to build and operate the future Kai Tak sports complex. It is sitting on a current fiscal surplus of almost HK$1 trillion.

But it does not have money for thousands of patients who are dying from unusual diseases. Some drugs they need cost HK$20,000 to HK$30,000 a month, which is far beyond the ability of most Hong Kong people to afford.

Hong Kong single mother with rare genetic disease dies following emotional appeal to lawmakers for drug subsidies

Unlike some developed economies, Hong Kong doesn’t have a funding policy on rare diseases. Granted, these are complicated issues: what treatments for which diseases should be publicly funded? How to determine whether a new and expensive drug is cost-effective? How much we need to budget if we compile a new list of rare diseases for funded treatment?

The government should have already resolved these issues. If not, it should do so now.

According to the Alliance for Rare Diseases and the Tuberous Sclerosis Complex (TSC) Association, there are about 7,500 patients with rare diseases in Hong Kong. They are urging the authority to approve medication for four rare diseases, including TSC.

The government should immediately authorise contingency funding in life-threatening cases.

We have already seen the tragic case of single mother Chi Yin-lan, 36, who died last month from TSC after failing to get a new but expensive medication subsidised. Her 13-year-old daughter has inherited the condition. There are about 200 TSC sufferers in Hong Kong.

But what we need is a rare disease funding policy, if not now, very soon. What’s a few billion dollars to this government anyway?