After months of trying to find funding for medicine that could change six-year-old Landen Alexa’s life, he was denied coverage from B.C. Pharmacare for a third time.
“It’s just me fighting right now. The media is over it, and I have been brushed off by [Premier] John Horgan and [Health Minister] Adrian Dix,” said Jillian Lanthier, Landen’s mother. “They won’t acknowledge me as a human being.”
Last June, 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 potentially fatal for him.
The medicine Landen is on now is no longer effective, and the only option for treatment is a drug called Ilarus, which is going to cost Lanthier $19,000 a month. It’s not covered by B.C. Pharmacare.
Landed spent Christmas Eve in hospital, screaming in pain from the disease, and yesterday began chemo to help manage the pain.
“They almost had to cut his shirt off because he had no mobility in his arms,” Lanthier said.
She explained that Landen has good days and bad days, but lately has been consistently coming home by noon in crippling pain.
“The chemo will hopefully help a bit, but I just look at it as ‘Here you go Landen, another Band-Aid’,” Lanthier said.
“I’m feeling very angry and sad.”
In response to Landen’s battle, a petition has been started by the Cassie and Friends Society for Chieldren with Juvenile Arthitis and other rehuematic diseases. So far, it’s received more than 8,000 signatures.
Lanthier added that she is frustrated because she has watched medicine, such as the abortion pill, recently get covered by the B.C. Health Ministry, but can’t get a response from anyone to find funding for Landen.
“It’s great that those types of things are free for everyone in the province now, but I am sitting here and my son is fighting to live a normal life, and no one will even acknowledge us,” she said.
There are only approximately 10 children in B.C. who are battling the same disease as Landen, and the medicine could greatly improve his quality of life, helping with pain and allowing him to make fewer hospital visits.
“I’m not giving up, and I’m not taking no for a third time as their final answer,” said Lanthier. “I have a lot more fight left in me, I just don’t know which avenue to take yet.”
Horgan, who is also MLA for the Sooke region, did not return calls for comment.