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