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

UPDATE: Island Health says no need for alarm over needle prick incidents in Victoria

Briefing followed meeting between Island Health, downtown service providers

Victoria a hot spot for millennials: new study

City ranks No. 2 for generation of Canadians seeking work-life balance

Rumble in the Vale: Strawberry Vale homeowners hang banner protesting construction noise, rumbling

Banner reading ‘Do you hear what we hear?’ hangs over Colwood Crawl

Central Saanich police chase down speeding biker

A motorcyclist from the Lower Mainland was caught on the Tsawout reserve… Continue reading

False missile alert for Central Saanich councillor

While on vacation in Hawaii, Central Saanich Councillor Alicia Holman was awoken… Continue reading

Solitary-confinement veto a chance to address mental health: advocate

B.C. Supreme Court made the landmark ruling Wednesday

Winter storm coming to B.C. this weekend

The bets are on as to how much snow the province will actually get in the coming days

B.C. civil rights group files complaint about RCMP arrest of man who later died

Dale Culver, a 35-year-old Indigenous man was arrested in Prince George last July

Lawyer says former B.C. government aide ‘barely guilty’ in ethnic vote scandal

Brian Bonney pleaded guilty to a breach of trust charge

Saanich lights up Layritz Park with solar-powered lights

Saanich plans to install more solar-powered lights after installing them in Layritz… Continue reading

Quite a few tears as homemade quilts distributed to residents of Ashcroft Reserve, Boston Flats affected by last summer’s fire

Quilters in B.C. and Alberta worked through the summer and fall to create more than 100 quilts.

Victoria real estate sales off to slow start

New figures show regional real estate sales are off to a slow… Continue reading

B.C. coast loggers celebrate history, hope for improvement

Truck Loggers Association awaits B.C. NDP government’s new direction

Global Affairs aware of report of two Canadians kidnapped in Nigeria

The foreigners were heading south from Kafanchan to Abuja when they were ambushed around Kagarko

Most Read