SINGAPORE - When their son started gagging and refusing his food at about eight months old, the first-time parents knew something was amiss. Read more at straitstimes.com.
The spokesman from NUH said other options of treatment for SMA include Spinraza, a therapy given every four months, and risdiplam or Evrysdi, an oral medication administered daily.Spinaza is not available for patients in Singapore while Evrysdi, which Shamel has been taking since January, costs about $16,000 per bottle and lasts him 40 days.
Zolgensma is only available in Singapore via the Special Access Route – which allows for unregistered life-saving drugs to be imported into the country. His mother, who wanted to be known only as Ms Shu Wen, a designer, 35, “We knew it would be effective as we had seen videos of SMA patients before and after they had Zolgensma.”
But they have no other choice since Zolgensma is neither subsidised by the Government nor covered by their insurance. Dr Lim said there will be “more and more” drugs costing millions: “It’s in society’s interest to pay for at least some of them if you want to encourage innovation. However, there is no system in the world that is prepared for this magnitude of financing.”
He believes the correct way to finance such drugs is through insurance and risk pooling, which can only be made feasible through legislation.
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