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
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.
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.
Dealing with health care expenses is equally important. The “rule of rescue” – that is, a duty to save an endangered life where possible – would be a fair principle to use, prioritising the severity of a disease over the cost of treatment, upholding the equality principle in the public health care system. Subsidies should not only cover drug costs and other medical expenses, but research, drug development, talent development and equipment purchases by the relevant organisations.
Establishing a rare disease database would help with analysis of the family history of patients with a rare disease, to reduce the incidence of such genetic diseases. This could prompt those at risk to undergo genetic testing before having children. The database could also collect the particulars of patients who have received false diagnoses, to help in training medical staff.
Now is the time for the government to respond to patients and their families through a comprehensive assessment and implemention of such policies.
Raymond Mak is governor of the Path of Democracy and executive director of the Hong Kong Academy of Politics and Public Policy