Sooke mom hopeful for funding to treat child’s debilitating arthritis

Jillian Lanthier ‘prays’ for $19,000 per-dose drug for her son

A Sooke mother is wondering why one B.C. child with the same disease as her son has received government funding for a life-altering drug, but her son has not.

Last June, Sooke’s Landen Alexa, 6, was diagnosed with systemic juvenile idiopathic arthritis , or SJIA, a disease that causes his body to attack itself, leaving him with crippling muscle and joint pain and with virtually no immune system.

RELATED: Six-year-old Sooke boy needs $19,000 a month to treat rare form of arthritis

Landen’s current medicine is no longer working effectively, and the only option for treatment is Ilarus, a drug that costs $19,000 a month, and is not covered by B.C. Pharmacare.

Recently, 11-year-old Jaylene Prime, who has the same illness as Landen, became the first child with SJIA in B.C. to be granted reimbursement coverage for Ilarus, on an exceptional basis.

RELATED: Aldergrove family first in B.C. to receive reimbursement for life-altering arthritis drug

“I am very happy for the Prime family. I don’t want any child to suffer the way I see Landen suffer, and I pray the drug brings Jaylene some relief,” said Jillian Lanthier, Landen’s mother.

“But I am saddened for Landen, and I guess at the end of the day I just hope that this helps pave the way for him to get approved too.”

Approximately 10 children in B.C. have SJIA

Landen has applied three times to receive the same provincial funding for treatment, but all three requests have been denied.

The B.C. Health Ministry said arthritis coverage requests are reviewed by independent specialist rheumatologists on a case-by-case basis, who look at the details of each patient’s case. This includes, “all appropriate treatment options available to the patient and what treatments have already been explored that Pharmacare provides coverage for,” the ministry said in a statement.

Ministry officials would not speak to the details on how specific patients are chosen to receive coverage.

“I was told by the ministry that if they approved Landen’s case, other cases like his in the province would need to be approved too, and the money simply wasn’t there to do that,” said Lanthier. “That doesn’t make sense to me now.”

RELATED: Sooke steps up to help sick boy

Lanthier said she plans to meet with Landen’s doctor soon, and will be sending in another request for government funding.

“I am praying for the best and am hopeful for a miracle. I am going to keep fighting for my son,” said Lanthier.



editor@sookenewsmirror.com

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