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Dozen of parents and children rallied outside Premier John Horgan’s Langford office on Jan. 15 in support of Landen Alexa, 6, who is seeking a drug that could change his life.
Last spring, Landen, a Sooke resident, was diagnosed with systemic juvenile idiopathic arthritis, more commonly known as SJIA, a disease that causes his body to attack itself, leaving him with crippling muscle and joint pain and with virtually no immune system.
The disease is so severe, even a common head cold can be fatal.
The medicine Landen is on now is no longer effective, and the only option for treatment is a drug called Ilarus, which costs $19,000 a month. It’s not covered by B.C. Pharmacare.
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Those at the rally chanted “Love for Landen” and “Don’t abandon Landen.”
“We came here to support Jillian and Landen. We feel that Pharmacare isn’t being fair in their decision in helping Landen with the disease he has,” said Sunni Anthony, who brought her three-year-old son Finlay to the rally.
“It’s an expensive medication that nobody can afford. Every child has a right to a normal life.”
The show of support brought tears to the eyes of Landen’s mother, Jillian Lanthier.
“I hope this brings attention to Landen’s case and I hope we can sit down with [Health Minister] Adrian Dix or John Horgan and discuss Landen’s case,” she said.
Horgan responded to the issue at his weekly press conference in Victoria.
“As a parent, I would do, as I know you all would, anything for my child. My office has been advocating as a member of the legislature for the family, in terms of getting the appropriate meetings and conversations started, and we will continue to do that.”
Horgan said he agrees with Dix that politicians shouldn’t be approving drugs for distribution in B.C, and believes the pharmaceutical sector has some responsibility in the issue as well.
“I would like to think that we can work as a government through Pharmacare and through the federal government as well, to try and accelerate approvals not just in B.C. but in Canada,” Horgan said.
He added that he would also like to work with the providers of the “pharmaceutical miracle” drugs, to try and get them in to people’s hands at a more reasonable cost.
“I think all British Columbians would agree it’s outrageous that a drug that will improve the quality of life of a youngster in extreme pain should cost twenty-grand. That strikes me as outrageous,” Horgan said.
