Ontario family looks to raise $3 million to buy live-saving drug for baby - CTV Toronto

Health Videojournalist, CTV News Toronto.

Every few weeks, Daniel Muljarahardja and his wife Saraswati bring their baby Marcellinus to Toronto’s Hospital for Sick Children for a painful spinal injection of a drug called Spinraza.

The family has started a GoFundMe campaign called Cure for Marcel to raise almost $3 million for a drug called Zolgensma

Zolgensma was given Health Canada approval in December but there are still several stages of negotiations before it can be funded provincially

That’s why they’re looking to the Ministry of Health and drug manufacturer Novartis for help on compassionate grounds

Tonight, Health Minister Christine Elliott sent CTV News Toronto a statement saying “We know SMA can be devastating for Ontario families

We welcome the news that Zolgensma has been approved by Health Canada.”

She said that the Canadian Pharmaceutical Alliance has been working with Novartis, adding the Canadian Pharmaceutical Alliance “has also requested that Novartis provide additional compassionate coverage for those patients unable to access the drug until these processes are complete.”

And they hope Spinraza can keep him healthy until Zolgensma becomes available to them, through whatever avenue they can find