The government has approved the sale of a new drug for patients who suffer from spinal muscular atrophy (SMA).
SMA is a genetic neuromuscular disorder characterized by the loss of motor neurons and progressive muscle wasting, which often leads to early death.
On Sept. 21, the Department of Health added Spinraza, the name of the drug, to the list of registered pharmaceutical products, Apple Daily reports.
The move came after an SMA patient asked Chief Executive Carrie Lam Cheng Yuet-ngor in October last year to allow the importation of Spinraza, which had been approved by the US Food and Drug Administration but not yet registered in Hong Kong at the time.
While the government’s move is welcome news for SMA patients, the drug does not come cheap: it may cost as much as HK$1 million per shot and they probably need to take three to six shots a year.
The Hospital Authority said the Community Care Fund Medical Assistance Programme will put Spinraza on its list of drugs covered by financial assistance. An expert panel will vet applications and treatment can begin at the end of this year.
A report on the issue of self-pay ratio will be completed by the end of this year, according to the authority.
Biogen, manufacturer of Spinraza, announced on Tuesday that the nine SMA patients who have been using it for free since early this year under an Expanded Access Programme between the government and the drug maker will be able to continue enjoying the service before an official subsidy scheme is launched by December.
No more new SMA patients will be accepted under the existing scheme, the pharmaceutical company said.
Josy Chow Pui-shan, a 23-year-old University of Hong Kong (HKU) student who was born with the rare disease, welcomed the introduction of Spinraza in Hong Kong.
She was the one who had petitioned Lam to allow the importation of the drug.
Chow said the high cost of the drug is a great burden for families of SMA patients. And as such, she hopes the government will be able to come up with a subsidy scheme to help people like her enjoy the benefits of the new drug.
Chow is one of the nine patients that currently receive free Spinraza treatment under the Expanded Access Programme.
– Contact us at [email protected]