CE visits patient with spinal muscular atrophy

Hong Kong (HKSAR) -      The Chief Executive, Mrs Carrie Lam, accompanied by the Secretary for Food and Health, Professor Sophia Chan, and the Dean of the Faculty of Medicine of the University of Hong Kong, Professor Gabriel Leung, visited spinal muscular atrophy (SMA) patient Miss Josy Chow at a studentresidence at the University of Hong Kong this morning (March 1) and told her about the latest developments of introducing a new drug for treating SMA in Hong Kong.

     Mrs Lam commended Miss Chow, who can only move two fingers but managed to enter the University of Hong Kong to pursue her dream as an author through strong determination and tremendous efforts, for her courage in the face of serious illness. Miss Chow learned earlier that international pharmaceutical company Biogen had developed a new drug, Spinraza, for treating SMA. For the benefit of all SMA patients in Hong Kong, she spent four months writing a proposal for introducing the drug into Hong Kong.

Mrs Lam received the proposal from Miss Chow in person outside the Chief Executive's Office on a Sunday in October last year and pledged to follow up proactively.

     "I was greatly touched by Josy's struggle and her extraordinary will. In addition to instructing the Food and Health Bureau (FHB) to follow up, I also penned a letter to the Chief Executive Officer of the pharmaceutical company, emphasising that the Hong Kong Special Administrative Region Government cares for these patients and urging the company to consider introducing the drug in Hong Kong. I am very glad that, with the efforts of the FHB and the Hospital Authority (HA) in the past few months, a consensus with the pharmaceutical company has been reached for the drug to be introduced in Hong Kong.

I visited Josy this morning to break the good news and thanked her for her long-time efforts in helping SMA patients," Mrs Lam said.

     To enable suitable patients to receive treatment as soon as possible, the pharmaceutical company will provide the drug for free to Type I (the most severe condition) SMA patients under an Expanded Access Programme before the registration procedure of the drug in Hong Kong has been completed. The experts in the HA will carry out the preparatory work at full speed, with a view to allowing the Programme to be implemented within two or three months. Meanwhile, the Hong Kong Pharmacy and Poisons Board will expedite the processing of the registration application of the drug.

After the registration has been completed, suitable SMA patients (including the patients who received free medication under the Expanded Access Programme in the early stage) may apply for access to the drug under an assistance programme to provide eligible patients with subsidies for the purchase of ultra-expensive drugs under the Community Care Fund. In the Budget delivered by the Financial Secretary yesterday, an extra $500 million has been earmarked for this purpose.

     "Although the number of patients suffering from SMA and other rare diseases is small, the current-term Government will strive to be people-oriented and use public resources to provide the needed relief," Mrs Lam said.

Published on: 2018-03-01

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