A Sooke family is pleading with the province to help cover a potentially life-changing drug for their young son, who suffers from a rare condition that causes him constant pain.
Last summer, six-year-old Landen Alexa was diagnosed with a rare form of arthritis called systemic juvenile idiopathic arthritis, which can leave him writhing in pain.
"When Landen was diagnosed in June, when they told me arthritis I thought 'Okay, it's not gonna be that bad,'" said his mother, Jillian Lanthier.
But the reality of the devastating condition soon revealed itself.
"Thursday night, Landen was in the hospital unable to move his neck. Friday he was in for treatment. It basically has stopped our world," she said.
Landen's doctor says the young boy's only hope for relieving his chronic pain lies in a drug called canakinumab, which costs $19,000 a month.
With the drug unaffordable and out of reach, Landen's mother turned to B.C.'s Pharmacare program for help – but her plea to have the cost covered was denied.
"It's very hard, because I'm asking the B.C. government for a case-by-case approval," Lanthier said. "If he doesn't get this drug, we continue on the path that we are, and that is failure…If he keeps failing treatment, we keep going to the hospital."
While Landen's condition is unique, his family's fight for the life-altering drug is similar to other high-profile cases seen in B.C.
University of Victoria grad student Lilia Zaharieva made headlines as she lobbied the province to cover Orkambi, another drug considered life-changing for cystic fibrosis sufferers.
Both Orkambi and canakinumab are approved by Health Canada but not recommended for coverage, a ruling B.C. Health Minister Adrian Dix is standing by.
"I think nobody wants a world where the Minister of Health decides the effectiveness of prescription drugs," Dix said last November. "That process has to be led by experts, and it is led by experts."
But the ministry has made exceptions in the past, such as making the pricey drug DUODOPA available for people with advanced Parkinson's disease, giving Landen's family a little hope.
Since learning about Landen's condition, support from the community has poured in, and some held a rally outside B.C. Premier John Horgan's MLA office in Langford Monday.
Supporters held signs with messages like "Don't Abandon Landen" and called on the government to step in and help support the drug.
His family's pleas have also sparked a GoFundMe campaign, which had raised nearly $12,175 as of Monday to go toward the price of canakinumab therapy for Landen.
A Change.org petition asking BC Pharmacare to cover the drug had received nearly 20,000 signatures as of Monday.
