Sufferers of rare diseases in Hong Kong need more support – that, at least, is one thing political rivals can agree on

Raymond Mak says the government should grasp the opportunity to implement policies that offer support to such patients, given the consensus among rival factions for action

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The president of the Hong Kong Alliance for Rare Diseases, Tsang Kin-ping (wearing glasses), Rebecca Yuen Pui-ling, from the Tuberous Sclerosis Complex Association of Hong Kong (second from right), and patient Kong Wong Fung-ming rally outside the government headquarters in Tamar, calling on the Hospital Authority to subsidise drugs for rare diseases. Photo: David Wong

Published: 10:01am, 15 Oct 2017Updated: 6:37pm, 15 Oct 2017

Three days before her policy address, Carrie Lam Cheng Yuet-ngor promised to try to secure treatment for sufferers of rare diseases. That came after the pro-establishment camp launched a campaign for more resources for such patients.

Over the past two years, patients suffering from two types of rare disease, spinocerebellar atrophy and tuberous sclerosis complex, are suspected to have taken their own lives because of their prolonged illness and a lack of affordable drugs.

Government support for these patients has been rather limited, in terms of financial help and caregiving.

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Places such as Taiwan and Japan have implemented policies to cater to the needs of people suffering from rare diseases. However, similar policies have yet to reach Hong Kong, although a Legislative Council panel has studied the issue and pan-democratic lawmaker Fernando Cheung Chiu-hung has advocated implementing these type of policies for years.

With political rivals and our chief executive all seemingly focused on the issue, the government should grasp this opportunity and focus on three areas in particular: definitions of a rare disease, subsidies, and analysing the data.

Lawmaker Fernando Cheung speaks about the case of seven-year-old Hong Kong boy Xiao Hiu-chun, who suffers from a rare disease and is seeking subsidised access to an expensive drug on a long-term basis. Photo: Dickson Lee

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Officially defining what constitutes a rare disease would certainly help. The government should consider expert Lam Ching-wan’s definition: a patient who has undergone most medical tests but not diagnosed after three months should be recognised as a rare disease patient, enabling them to receive treatment more quickly.