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Carrie Lam

Carrie Lam promises to ‘personally’ ensure life-saving drug for Hong Kong patients with spinal muscular atrophy

The chief executive made vow in Facebook post in response to open letter by spinal muscular atrophy patient Josy Chow

PUBLISHED : Sunday, 29 October, 2017, 7:26pm
UPDATED : Sunday, 29 October, 2017, 9:25pm

Hong Kong’s leader has promised to “personally” ensure quick access to a potentially life-saving drug for patients suffering from a rare disease.

Chief Executive Carrie Lam Cheng Yuet-ngor made the pledge in a Facebook post on Saturday, in response to an open letter by paralysed 23-year-old patient Josy Chow Pui-shan.

Chow was born with spinal muscular atrophy (SMA), a genetic disorder that gradually destroys physical abilities such as walking and breathing.

Using only two fingers, Hong Kong girl types 22-page proposal calling for life-saving muscle drug

Nusinersen, marketed as Spinraza, was the first drug for SMA approved by the US Food and Drug Administration in December last year, but it has yet to be introduced in Hong Kong.

Chow’s letter, published in local media, described her difficulties in daily life because of the disease and reiterated her hope for the government to accelerate the introduction of the drug.

Earlier this month, at a patients’ group rally, Lam had personally received a proposal by Chow calling for the drug to be available locally.

“Dear Josy, thank you for your open letter to me today,” Lam said in her Facebook post. “Once again, I express my concerns for you and patients like you who suffer from SMA, and your anxiety waiting for the introduction of the new drug.

“The Secretary for Food and Health has already contacted the drug manufacturer and I will see to it personally. Please rest assured that we will put in our best effort.”

Hong Kong Chief Executive Carrie Lam promises to try to secure treatment for rare disease sufferer

In the post, Lam said she finished reading Chow’s proposal in one go, praising the plan as “rich in information” and of “extremely high standard”. She also described Chow and her mother as “strong and perseverant”.

In her open letter, Chow said she finished the proposal in almost four months, assisted by her mother, as she typed much slower than others because of her physical limitations.

On Sunday, Undersecretary for Food and Health Dr Chui Tak-yi said the government had met the pharmaceutical company once and expected it to provide the drug soon for patients in the city. But Chui said there was still no timeline for this process.

The cost of the drug per patient is about HK$6 million in the first year of treatment and HK$3 million annually in subsequent years.

There are an estimated 85 SMA patients in the city, with 20 of them suffering from the most severe form of the disease and requiring frequent intensive care in hospital.