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

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

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

A woman wears a face mask and shield to curb the spread of COVID-19 while walking in North Vancouver, B.C., on Wednesday, January 6, 2021. THE CANADIAN PRESS/Darryl Dyck
57 new cases of COVID-19 in Interior Health region

Thirty people in the region are in hospital, 16 of whom are in intensive care

An alleged suspect in two Cache Creek crimes was caught on surveillance camera in April 2021,and police are hoping someone can identify him. (Photo credit: RCMP)
Alleged suspect in Cache Creek crimes caught on video

Police are hoping someone can identify man who is a suspect in two Cache Creek incidents

An information slide shared at the Cache Creek council meeting on May 3 shows the annual operating costs and revenues of the pool from 2009 to 2019. There is no provision in this year’s budget to open the pool for the 2021 season. (Photo credit: Village of Cache Creek)
Cache Creek faces 30% increase in taxes, 25% increase in utilities in 2021 budget

Financial position means pool will remain closed in 2021

This house on Sunvalley Crescent in Cache Creek sold for above list price in February 2021. (Photo credit: eXp Realty)
Local housing market heating up with higher prices and more demand

House prices are up, selling time is down, and more people are looking to relocate to the region

Clinton village office, 2014. Photo credit: Journal files
Village offers grant funding opportunity to Clinton non-profits

Council votes to provide up to $50,000 to assist non-profit organizations hit hard by COVID-19

Jose Marchand prepares Pfizer COVID-19 vaccination doses at a mobile clinic for members of First Nations and their partners, in Montreal, Friday, April 30, 2021. The National Advisory Committee on Immunization is coming under fire after contradicting the advice Canadians have been receiving for weeks to take the first vaccine against COVID-19 that they’re offered. THE CANADIAN PRESS/Ryan Remiorz
Trudeau says he is glad he got AstraZeneca, vaccines are only way out of pandemic

‘The most important thing is to get vaccinated with the first vaccine offered to you’

B.C.’s provincial health officer, Dr. Bonnie Henry. THE CANADIAN PRESS/Jonathan Hayward
Dip in COVID-19 cases with 572 newly announced in B.C.

No new deaths have been reported but hospitalized patients are up to 481, with 161 being treated in intensive care

Solar panels on a parking garage at the University of B.C. will be used to separate water into oxygen and hydrogen, the latter captured to supply a vehicle filling station. (UBC video)
UBC parkade project to use solar energy for hydrogen vehicles

Demonstration project gets $5.6M in low-carbon fuel credits

FILE – A student arrives at school as teachers dressed in red participate in a solidarity march to raise awareness about cases of COVID-19 at Ecole Woodward Hill Elementary School, in Surrey, B.C., on Tuesday, February 23, 2021. THE CANADIAN PRESS/Darryl Dyck
B.C. ‘should be able to’ offer 1st dose of COVID vaccine to kids 12+ by end of June: Henry

Health Canada authorized the vaccine for younger teens this morning

A woman in the Harrison Mills area was attacked by a cougar on Tuesday, May 4. B.C. Conservation Officers killed two male cougars in the area; the attack was determined to be predatory in nature. (File photo)
2 cougars killed following attack on woman in Agassiz area

Attack victim remains in hospital in stable condition

A woman wears a face mask and shield to curb the spread of COVID-19 while walking in North Vancouver, B.C., on Wednesday, January 6, 2021. THE CANADIAN PRESS/Darryl Dyck
B.C. CDC updates info, acknowledging small respiratory droplets can spread COVID-19

Large droplets, not aerosols had been fixture of public health messaging for many months

A picture of Shirley Ann Soosay was rendered from a postmortem photographer and circulated on social media. (DDP graphic)
B.C. genealogist key to naming murder victim in decades-old California cold case

In July 1980, Shirley Ann Soosay was raped and stabbed to death

Mary Kitagawa was born on Salt Spring Island and was seven years old when she was interned along with 22,000 B.C. residents in 1942. (B.C. government video)
B.C. funds health services for survivors of Japanese internment

Seniors describe legacy of World War II displacement

Most Read