Expensive drug to be covered by OHIP
OHIP will now cover one of the world's most expensive drugs, Spinraza.
This is the same drug that three-year old Lilah Lotus of Maidstone requires to treat a rare motor neuron disorder called spinal muscular atrophy.
“I’m very excited. It's a big step, a big leap forward,” says Lilah’s mother Nicole Lamont, who first heard the news from CTV Windsor. “It means the world to us, it takes a huge weight off of our shoulders, especially when she's improving so much. For that I am very grateful for Ontario to kind of step up.”
The drug costs $750,000 U-S for the first year and $375,000 a year every year after that for life, but this miracle drug offers the only hope for people with SMA.
The drug’s producer Biogen has been paying for Lilah’s treatments through its early access program.
“If it wasn't for Spinraza, Lilah wouldn't be here and she wouldn't be three quarters as strong as she is now,” adds Lamont. “She's off her ventilator for eight and a half hours a day, breathing on her own, she's rolling, lifting her arms up off the bed.”
The Ontario government says the OHIP coverage is only available for patients with the most severe types of SMA and only up until the age of 18.
After that, patients will have to apply for coverage.
Lamont hopes the government will approve the drug for all ages.
“Young adults, they can still benefit from it, that's going to be our next step and my role as an advocate to get that for all ages just like Quebec and Saskatchewan,” adds Lamont.
CTV News Windsor caught up with Lilah and her family on the weekend after Westcott Concrete generously built a sidewalk around the family home free of charge.
It will allow Lilah to play outside in her wheelchair.
Lilah was given 12 months to live at the age of nine months, but has been improving every day with the help of Spinraza.
Dozens of people also attended the Hope for Lilah Walk on Sunday at Malden Park.