Sooke mother desperate for B.C. to fund life changing $19,000-per-dose drug for sick son

Sooke mother desperate for B.C. to fund life changing $19,000-per-dose drug for sick son

WATCH: A Sooke mother is making a plea to the province after she feels she’s run out of options. It’s all because of her son, who is sick with arthritis, and an expensive medicine she says she can’t afford. Luisa Alvarez reports.

At first glance, you would think Landen was just like any other six-year-old boy. But what started as a rolled ankle last spring quickly spiralled into a nightmare and Landen was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA).

?He had a fever of 103 and he was stiff as a board. I couldn’t bend him I couldn’t bend his hips he was basically immobile” said Landen’s mother Jillian Lanthier.

It’s a rare autoimmune disease that not only affects his bones but his entire system as well.

?I thought it’s just arthritis like just a couple of sore bones but when you’re put in a helicopter and you meet with cardiologists about your son’s heart it brings another level of devastation. It attacks his major organs, his tissues his heart his brain all joints, his lungs? said Lanthier.

The disease can be fatal and there is no cure. There is only trial and error treatment to manage symptoms and Landen’s mother says the one he is on hasn’t quite worked.

? Landen goes to bed with several ice packs probably four out of seven times a week and that’s with the medication that he’s on with the additional pain meds and the additional steroids and he still doesn’t have the life he had before,” said Lanthier.

The other option is Canakinumab but, it is not covered in B.C. under PharmaCare and it comes with an enormous price tag of $19,000 dollars a month or $228,000 a year.

Desperate for a better life for her son, Lanthier wrote an open letter to Premier John Horgan, Prime Minister Justin Trudeau and BC?s Health Minister Adrian Dix.

 I’m asking for access to canakinumab for my son I?m not asking for a paycheque or anything further. I just believe Landen deserves access to this medication” said Lanthier. 

It’s medication she is confident could truly make a difference in managing Landen’s disease after finding out another little boy with the same disease on the drug is thriving. His parents have extended benefits to cover the cost unlike in Jillian’s case.

?It makes me sad that Landen isn?t being given this chance that the other little boy has based on what I do for work or what my extended benefits are,” said Lanthier.

An online petition for BC PharmaCare to fund the drug is circulating online and Jillian started a GoFundMe page. The cost of one single dose is $19,000 and the amount she is seeking is only for $5,000. Lanthier says its not about the money.

” I would love for the go fund me page to bring awareness to our situation right now and I?m hoping Mr. Horgan and the province of BC will pull through? says Lanthier. 

If they do, the funds from the campaign will be donated to the pediatric child life floor. Lanthier adds her only hope is for Landen to go back to the little boy she once knew.

“Right now, I feel like Landen isn’t even Landen,” said Lanthier.

Luisa AlvarezLuisa Alvarez

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