B.C. mother pleads for coverage of drug for son's rare condition

Landen Alexa, 6, was diagnosed with a severe form of juvenile arthritis called Systemic Juvenile Idiopathic Arthritis in June.

Landen Alexa, 6, was diagnosed with a severe form of juvenile arthritis in June

Landen Alexa, 6, during hospital treatment for Systemic Juvenile Idiopathic Arthritis. (Jillian Lanthier)

A mother in Sooke, B.C., is hoping the province will reconsider after her son was denied coverage for a medication that could help treat his condition.

Landen Alexa, 6, was diagnosed with a severe form of juvenile arthritis called Systemic Juvenile Idiopathic Arthritis in June. 

"His arms from his shoulders to his wrists lock by his side. That leaves him unable to put a fork to his mouth or pull his pants down to go to the bathroom," said his mother, Jillian Lanthier.

Landen is being treated with a medication, but Lanthier says it has not proven effective in dealing with his chronic pain.

His doctor has prescribed a different drug called canakinumab, a biologic medication that targets the specific immune dysfunction connected to Landen's condition.

No PharmaCare coverage

But canakinumab costs $19,000 per month for each patient and is not covered by B.C. PharmaCare.

Lanthier learned over the holidays that a request for coverage for Landen has been denied.

"I never thought I would be fighting the health-care system for a medication that is available and is being declined because of cost," Lanthier said.

This week, Lanthier wrote an open letter to B.C. Health Minister Adrian Dix calling on him to intervene.

She is hoping the province will at least agree to cover a three-month supply of the drug to determine if it will work for her son.

"Landon deserves a chance, and what I am asking the government for is a chance," she said.

Landen Alexa is one of about 10 children in B.C. who have a rare form of arthritis that could be treated with the drug canukinumab.

The Ministry of Health says it can't comment on individual cases due to privacy.

But in a statement, the ministry says B.C. PharmaCare relies on physician specialist committees to review requests and provide coverage recommendations.

In a case such as Landen's, that committee would be comprised of three rheumatologists.

'End of the road'

Decisions on covering expensive drugs are difficult, as the province has to weight the effectiveness of a drug against its cost, said Alan Cassels, a drug policy researcher at the University of Victoria.

"If you have a certain population of people that you have to treat, the money only goes so far," he said, adding it's not clear why the cost of this particular medication is so high.

In the case of Systemic Juvenile Idiopathic Arthritis, two other treatments are available at a lower cost.

But for a small number of children, those other treatments have not been effective, says Jennifer Wilson, executive director of the Cassie and Friends Society for Children with Juvenile Arthritis and Other Rheumatic Diseases.

Landen is one of about 10 children in B.C. who could benefit from access to canakinumab, Wilson said.

"We are not asking for coverage for thousands but a very small number of children who are at the end of the road in terms of options," she said.

A petition started about a year ago by the society has collected more than 15,000 signatures in support of covering the drug.