To give hope to rare disease patients, Hong Kong must revamp its drug policies

Last week was a remarkable one for rare disease patients in Hong Kong, with the government announcing that the long-awaited spinal muscular atrophy (SMA) drug would be available in the city very soon.

Last October, Chief Executive Carrie Lam Cheng Yuet-ngor met SMA patients and their parents outside her office and promised that her administration would do all it couls to table a sound solution for them. The government has also committed to improving health care support and services, especially for rare disease patients, in the 2017 policy address.

Unfortunately, as quickly as the bureaucracy has responded, this is a matter of saving lives and patients cannot wait. In fact, in her latest radio interview, Josy Chow Pui-shan, the SMA patient who earlier wrote to Lam, revealed that over the past five months the cruel reality is that her condition has worsened, with multiple admissions to the intensive care unit and deteriorating mobility.

With abundant financial reserves and unprecedented determination to improve health care support, why is it so difficult for the government to give rare disease patients access to the needed resources?

Even though biomedical technology has been selected as one of Hong Kong’s strategic innovation areas, our regulations are far from up to date. For a new drug to be registered and sold in Hong Kong, the manufacturer has to first obtain market authorisation certificates from two “advanced” countries on our Department of Health’s list.