Date
21 July 2018
Chief Executive Carrie Lam talks with Josy Chow, a student suffering from spinal muscular atrophy, at the HKU student residence on Thursday. Lam gave Chow a "thank you" card for her bravery and persistence. Photo: ISD
Chief Executive Carrie Lam talks with Josy Chow, a student suffering from spinal muscular atrophy, at the HKU student residence on Thursday. Lam gave Chow a "thank you" card for her bravery and persistence. Photo: ISD

SMA patient wins Carrie Lam pledge on life-extending drug

Chief Executive Carrie Lam Cheng Yuet-ngor said a new drug will soon be available in Hong Kong to help patients suffering from spinal muscular atrophy (SMA) increase their chances of a longer life.

SMA is a genetic neuromuscular disorder characterized by the loss of motor neurons and progressive muscle wasting, which often leads to early death.

Josy Chow Pui-shan, a 23-year-old University of Hong Kong (HKU) student majoring in English and linguistics, was born with the rare disease. She had taken pains to write to the government, calling on it to import a new drug named Spinraza, which has been approved by the US Food and Drug Administration but not yet registered in Hong Kong.

Lam paid a visit to Chow at the HKU student residence on Thursday morning. The chief executive was accompanied by Secretary for Food and Health Prof. Sophia Chan Siu-chee and Professor Gabriel Leung Cheuk-wai, dean of the university’s Li Ka Shing Faculty of Medicine.

She told Chow that the drug she has been waiting for will arrive in about two months’ time at the earliest, the Hong Kong Economic Journal reports.

According to Lam, she wrote to the drugmaker a few months ago and expressed the government’s hope to see the drug introduced in Hong Kong, and the pharmaceutical company agreed.

Lam acknowledged Chow’s contribution in making this happen and praised her bravery and perseverance.

The chief executive also revealed the government will allow eligible SMA patients to get the drug for free under an Expanded Access Programme before the drug registration procedure in Hong Kong is completed.

Experts from the Hospital Authority will conduct the preparatory work at full speed, with a view to allowing the program to be implemented within two or three months.

Lam said the Department of Health will help in having the drug registered and include it on the government’s list of subsidies for ultra-expensive drugs.

Hearing the good news, Chow, who is paralyzed from the neck down and is only able to move two fingers in her right hand, said with tears in her eyes that is the best gift for her birthday that is coming up next Saturday.

At a press conference arranged by the university on Thursday night, Chow aid she could not believe that her dream has finally come true and thanked Lam for not giving up on her and other SMA patients.

In response to media inquiries about the matter, Hospital Authority chief executive Dr. Leung Pak-yin said only SMA Type I patients could be given the drug for free once it is introduced under an agreement between the government and the drug maker.

The government hopes to include Type II patients under the program by the end of this year.

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TL/JC/CG

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