WATCH: Supporters of a six-year-old Sooke boy with a rare form of arthritis say he’s been treated unfairly by the province after his mother’s request for access to an expensive drug was turned down.
Updated with comment from Landen Alexa’s mother Jillian Lanthier.
Robert Gillespie, one of Landen Alexa’s supporters, says he’s angry over the B.C. health minister’s decision to not intervene, following news that an 11-year-old girl in Aldersbrook with the same illness was approved for the same drug.
“Every day that little boy [Alexa] wakes up in hell. That’s not going to stop until he gets the proper medicine,” Gillespie said. “It’s about every child in this province that has that medical problem, and you cannot treat one without treating the others. It’s not right, it’s not fair.”
Canakinumab, a medication that targets the specific immune dysfunction connection to Alexa’s condition, costs $19,000 per month.
Alexa, 6, lives with Systemic Juvenile Idiopathic Arthritis, a rare and painful form of juvenile arthritis.
His mother, Jillian Lanthier, has applied for funding but has been turned down three times by the province.
Last month, she made an emotional plea to health minister Adrian Dix at a town hall in Sidney.
He responded by saying it would not be appropriate for him to intervene.
Dix told CHEK News on Thursday he had not changed his mind.
“I know people would like me to intervene and make these decisions, but I don’t think anybody really thinks that’s a good idea,” Dix said. “I think everybody would agree that the process we’ve put in place, which is led by rheumatologists, is the right process. And that’s the one we’re going to continue to follow.”
Gillespie says they will keep pressing the government until they see action.
“… some [children with SJIA] are being helped and some aren’t,” Gillespie said. “And that really isn’t just or isn’t fair.”
Thursday night was a big night for Landen as he was invited to drop the puck at the Victoria Grizzlies game at the Q Centre in Colwood.
We spoke with his mother, Jillian Lanthier, afterwards about what impact the decision to grant the first SJIA sufferer in B.C. coverage for the drug will have on her fight.
“I’m ecstatic for her family and I’m happy that she won’t have to suffer like Landen has suffered,” she said.
“I’m sad for Landen but I’m hoping again it’s a step in the right direction and I hope the government is responsive to our next application.”
Lanthier says she plans on filing a fourth application soon.