December 10, 2017 4:21 pm
Updated: December 10, 2017 4:24 pm

‘He’s just in constant pain’: Sooke mom’s desperate plea for son’s drug coverage

The drug that could treat Landen's rare disease costs about $228,000 per year.


A Sooke mother is pleading with the province to fund a drug treatment for her son’s rare disease.

Six-year-old Landen has Systemic Juvenile Idiopathic Arthritis (JIA), an illness his mother Jillian Lanthier says leaves him in chronic pain and sometimes using a walker.

The disease can also prove to be fatal.

LISTEN: Sooke mom pleads for Horgan to hear her

Speaking on CKNW’s The Jill Bennett Show, Lanthier said they’ve unsuccessfully tried two of the three treatment options doctors say exist.

The third, a drug called Canakinumab, costs more than $225,000 per year — and Landen has been denied PharmaCare coverage.

That prompted Lanthier to write an open letter to Premier John Horgan and Health Minister Adrian Dix to plead for help.

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“I have never in my life written any sort of letter like this, but I am reaching a new level of desperation.

I simply don’t have $19,000 per month for medication, but please tell me; what Canadian does?

I also, never imagined in Canada I would be fighting for a drug this expensive,” reads the letter, in part.

“I just wrote to [them] to basically beg for approval to help my son’s quality of life and to be able to survive this disease,” she said.

READ MORE: New calls for B.C. to cover cost of ‘life-changing’ cystic fibrosis drug

Lanthier said systemic JIA has transformed her son from a competitive BMX rider to someone who can’t even attend a full day of school.

He’s also on a steady dose of steroids and painkillers, she said.

“He’s just in constant pain.”

WATCH: Ailing UBC student now approved for expensive drug

Canakinumab is approved by Health Canada, and Lanthier said while it is not covered in any western provinces, it’s under review in some Atlantic jurisdictions.

She estimated fewer than 10 children in B.C. would need it.

READ MORE: It costs $750K per year to treat her rare disease, and B.C. doesn’t cover the cost

Lanthier acknowledged that while she believes the drug would improve Landen’s life, he may need to take it for years — or even a lifetime.

“Children with systemic JIA are pretty much robbed of their childhood,” she said.

“We have to try. So if it doesn’t work… I wouldn’t know what our options are. But we have to try.”

WATCH: Calls for government funding of cystic fibrosis drug

In a statement, the Ministry of Health said it is looking into Landen’s case.

“Arthritis is a complicated disease with many faces, with over 100 types, including juvenile idiopathic arthritis,” it said.

“The Ministry of Health has just been made aware of this case and will be reaching out to the family to look into the case further.”

READ MORE: B.C. government approves coverage of expensive drug for student with rare disease

Lanthier, meanwhile has started a petition and crowdfunding campaign — though she said the latter’s purpose is more a matter of raising awareness about Landen’s situation.

“I’m a single mom of four and asking for help is very difficult. So I did just yesterday create a GoFundMe page just because I had people asking and I didn’t know what to say.”

She said if the drug is funded by the province, any money raised would be donated to the hospital that’s been treating her son.

© 2017 Global News, a division of Corus Entertainment Inc.

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