Rare disease drug set for HK
The Government has reached an agreement with a pharmaceutical company to introduce a new drug to Hong Kong which can treat spinal muscular atrophy (SMA).
Chief Executive Carrie Lam gave the good news to SMA patient Josy Chow today at her University of Hong Kong student residence.
Mrs Lam commended Miss Chow for her determination in the face of serious illness, as she gained admission to the university despite being able to move only two fingers.
The student spent four months writing a proposal to introduce the drug to Hong Kong after learning the international pharmaceutical company had developed the treatment.
After receiving Miss Chow's proposal Mrs Lam wrote a letter to the Chief Executive Officer of the firm urging it to consider making the drug available in Hong Kong.
Mrs Lam said: "I am very glad that, with the efforts of the Food & Health Bureau and the Hospital Authority 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."
The company will administer the drug for free to those suffering from Type I SMA, the most severe condition, under an Expanded Access Programme before the registration procedure of the drug in Hong Kong has been completed.
Experts from the authority will conduct preparatory work quickly to implement the programme in two to three months.
Once registration is complete, SMA patients can apply for the drug under a Community Care Fund assistance programme, which will subsidise eligible patients for the purchase of ultra-expensive drugs.
Financial Secretary Paul Chan announced in his Budget yesterday that an extra $500 million has been earmarked for the programme.

