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

UPDATE: Tsunami warning cancelled for coastal British Columbia

Warning issued following 7.9 earthquake off Kodiak, AK

Doukhobor Heritage Society seeks zoning change for water plant

Questions remain on how taking 500,000 litres a day from aquifer would affect local water supply

Can the Arrow Lakes ecosystem be restored?

With cooperation and coordination, a local environmental group says it can

Judgment reserved in Nakusp school sex trial

Trial concluded today with lawyer’s summations

Former teacher acquitted on two of four sex charges

Judge found no evidence to support sexual assault charges against Shanny McIvor

Testing the Google Arts & Culture app

Going face to face with art

Man faces 48 charges in string of random Toronto shootings

The string of unprovoked shootings began Jan.9, say police

‘Shape of Water’ producer, Christopher Plummer among Canadian Oscar nominees

Guillermo del Toro film about merman romance earns 13 nominations

Canada, TPP agrees to revised deal without the United States

Canada and the remaining members of the Trans-Pacific Partnership have agreed to a revised trade agreement

Tsunami warnings 101: Canada

Here are some things to know about tsunami alerts in Canada and how they work

Rogers Media cuts ties with Vice Canada

Rogers Media and Vice Canada are ending their three-year-old partnership, pulling Viceland TV channel off the air

VIDEO: Fuel truck and train collide in B.C. causing massive fire

More emergency crews are still arriving on scene of a massive fire at the Port Coquitlam rail yard.

Back to work: U.S. government shutdown ends after Democrats relent

Short-term spending measure means both sides could see another shutdown stalemate in three weeks

Most Read