B.C. boy denied $19,000-per-month drug to ease ‘crippling pain’ for 3rd time

Sooke mom Jillian Lanthier says son Landen Alexa has been forgotten about by Premier John Horgan

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.”

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.



editor@sookenewsmirror.com

Like us on Facebook and follow us on Twitter

Just Posted

Nelson Star wins three national awards

One photo, one news story, and an editorial impressed judges at Canadian Community Newspaper Awards

West Kootenay Community Teeth Clinic Society in need of dentists

The society works with clinics to offer affordable care

Bounty on West Kootenay northern pike

$10 a head reward for northern pike caught in Columbia, Kootenay and Pend d’ Oreille Rivers.

Nelson fire department douses blaze on CPR land

Nelson police are investigating

‘The Columbia River is on fire!’

Fishing columnist Kerry Reed on the great fishing in the Columbia River and Kootenay Lake

VIDEO: Endurance cyclists ride West Kootenay trails

The TransBC Enduro swung through Rossland, Castlegar and Nelson

Trudeau’s youth council divided over Trans Mountain pipeline purchase

A letter signed by 16 past and present members was made public today, asking the federal government to reverse course

Hulk Hogan reinstated into wrestling Hall of Fame

Hogan had used racial slurs caught on video when talking about his daughter sleeping with a black man

‘Lava bomb’ through roof of tour boat injures 22 in Hawaii

“An explosion occurred near the shoreline hurling hot lava rocks towards the boat and injuring several passengers”

B.C. teen meets Nicolas Cage

Filming mob movie in downtown Vernon, B.C.

Critics claim Trump “defended a tyrant”

Trump questions US intel, not Putin, on Russia 2016 meddling

B.C. MLAs choose new children’s watchdog

Jennifer Charlesworth has worked in government, social services

B.C. reporter calls out immigration photo on social media as fake news

A Vancouver reporter is calling out a British politician for spreading fake news

Hundreds of Arctic glaciers shrinking, disappearing

Out of 1,773 glaciers, 1,353 shrank significantly between 2000 and 2016

Most Read