Rally for Sooke boy seeking treatment for rare form of arthritis held outside premier’s riding office

Rally for Sooke boy seeking treatment for rare form of arthritis held outside premier's riding office
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WATCH:  Luisa Alvarez was at the rally Monday outside Premier John Horgan’s office in Langford where strangers and friends gathered in support of a little boy whose quest for drug coverage continues to touch many in the community.

A rally in support of six-year-old Landen Alexa held outside Premier John Horgan’s Langford office drew a sizable crowd on Monday.

Children and parents, friends and strangers alike chanted and held signs to help Landen’s mother Jillian Lanthier.

She is fighting for access for her son to a drug called Canakinumab to treat a condition called Juvenile Idiopathic Arthritis.

The treatment would cost $19,000 a month and is not currently covered by B.C. Pharmacare.

Lanthier has already had her requests turned down and says she’s run out of options.

“The solution right now for Landen is to add more pain medication and try and prolong his current medication and prove to the government he has, in fact, failed all treatments,” said Lanthier.

The debilitating and rare form of childhood arthritis affects fewer than 10 children in B.C.

Right now, Landen has to take daily medication including chemotherapy for the pain and goes to the hospital every two weeks to be sedated for his IV treatment.

His mom says his treatment is not working and they want to try Canakinumab.

“We are all Canadians and it’s our Canadian right to universal healthcare and under the federal health care mandate, we are not supposed to go bankrupt trying to get health care and to live life. That is what makes us proud to be Canadian,” said rally organizer Tanis Nielsen-Rhoads.

Health Minister Adrian Dix says he is aware of Landen’s plight but that a panel of experts is in charge of deciding on funding for medication on a case by case basis.

“We have a process and a committee led by rheumatologists and that’s the way it should be,” said Dix.

But Landen’s mom believes the process is flawed.

She says the committee does not have any rheumatologists specializing in children.

“I’m not open to considerations of three rheumatologists that treat adults and not children, their suggestions to me,  some of them, we couldn’t try because Landen is a pediatric case. Not an adult,” said Lanthier.

“Jillian has done everything possible, step by step, and her pediatricians and the pediatricians at VGH are behind her in supporting her in the fact that Landen gets the drug that he needs, ” said Genny Barker.

Lanthier’s fight has seen many in the community touched by her son’s story and wanting to help.

” He can’t move his arms. How can a child play if he can’t move his arms?” said Sooke resident Joy Scott.

They hope Monday’s rally will help convince the Premier and the government to step in.

“This is his home riding, we are Sooke residents, just because you become Premier don’t abandon us,” said rally organizer Neilsen-Rhoads

The little boy who’s the focus in all of this support had a message too.

” Thank you,” said Landen.

 

Luisa AlvarezLuisa Alvarez

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