Sooke boy denied $19,000 per month drug for third time

Watching her son in excruciating pain is unbearable for Sooke mom

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.

RELATED: Six-year-old Sooke boy needs $19,000 a month to treat rare form of arthritis

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.”

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, was unavailable for comment.

To sign the petition to help convince the Health Ministry to fund cases like Landen’s, please go online to change.org.



editor@sookenewsmirror.com

Like us on Facebook and follow us on Twitter

Just Posted

Fries, gravy, cheese and goodwill: Victoria hosts Poutine Week

Buy one of the varying versions of this traditional dish and help feed hungry kids

Saanich homeless camp to voluntarily leave provincial land by Tuesday

‘If the province really wants to pick a fight with us, we may end up in John Horgan’s backyard,’ says camp leader Chrissy Brett

Saanich Neighbourhood Place serves up some politics with their pancakes

Local family resource and support centre aims to educate voters and politicians

Victoria lawyer urges B.C. law society to make pro bono work mandatory

Resolution says justice system is “at a crisis level” in B.C.

Pumpkin patch proposal takes engagement to new heights

Flyover of ‘Will you marry me’ written in pumpkins

Victoria teen suffers whiplash in school ‘bubble’ soccer game

Middle school students injured in teacher-student competition

Black Press to host extreme career fair in Victoria

The fair will run on Oct. 25 at the Bay Street Armoury

Enbridge to begin building road to access pipeline explosion site in B.C.

An explosion Tuesday knocked out a 91-centimetre line

Andrew Scheer on revamped NAFTA deal: ‘I would have signed a better one’

Conservative leader says he wouldn’t have signed USMCA

Matheson will have NHL hearing after Canucks rookie Pettersson hit

The 19-year-old Swedish centre appeared woozy after the hit

GUEST COLUMN: A better way to manage B.C.’s public construction

Claire Trevena responds to Andrew Wilkinson on NDP union policy

B.C. brewery creates bread beer from food waste

The brew aims to raise food waste awareness and provide funds for the food bank

Dad files Charter challenge after B.C. bans kids from taking transit unsupervised

Adrian Crook is taking his fight to B.C. Supreme Court

B.C. VIEWS: Cast your municipal vote for sanity on homelessness

Thousands on waiting list while anti-capitalist bullies get priority

Most Read