January 6, 2018 10:16 pm

‘A devastating feeling’: Sooke boy denied coverage for rare drug for 3rd time

The drug that could treat Landen's rare disease costs about $228,000 per year.


A Sooke mother says she’s at her wits’ end after her sick son was denied coverage for an expensive drug for the third time.

Six-year-old Landen has Systemic Juvenile Idiopathic Arthritis (sJIA), a rare form of the arthritis that leaves the boy in constant pain and can even cause death.

She’s been fighting to get coverage for a drug called Canakinumab, which comes with an annual price tag of more than $225,000.

READ MORE: ‘He’s just in constant pain’: Sooke mom’s desperate plea for son’s drug coverage

His mother, Jillian Lanthier, said the disease has transformed her son from an avid BMX rider to someone who uses a walker, takes constant pain medication and is often bed ridden.

WATCH: Growing questions about the cost of drugs for rare conditions

The drug is approved by Health Canada, but not covered by B.C. PharmaCare, and on Dec. 22 the family had yet another bid for coverage rejected.

Lanthier told Global News she’s still waiting to learn why Landen was again denied the medicine she says could relieve symptoms like fever and swollen joints.

“It’s a very hard pill for me to swallow. I filled my son’s chemotherapy prescription two nights ago at the pharmacy. It’s a devastating feeling as a mum.”

LISTEN: ‘He’s just in constant pain’: Sooke mom’s desperate plea for son’s drug coverage (Dec. 10)

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The Ministry of Health said it can’t discuss specific cases due to privacy reasons.

But it says in case-by-case requests for coverage such as this, PharmaCare refers the file to a panel of experts, who look at the medical details of the case.

“They would look at all appropriate treatment options, what treatments have been explored already, other treatment options available to patients that PharmaCare provides coverage for,” said a ministry spokesperson in an email.

“For example tocilizumab is fully covered under PharmaCare and anakinra is also available on an exceptional, case-by-case basis for sJIA patients,”

Lanthier said Landen is already on tocilizumab, which his specialist says isn’t working, and isn’t a candidate for anakinra, a painful procedure that requires 30 shots a month.

WATCH: BC man worries over life-saving drug coverage

She said Landen only needs about half of a regular dose of Canakinumab, and could share the drug with another small child.

“I just see dollar signs with our current situation, and Canakinumab doesn’t require an IV. It takes away our hospital stays. It’s administered at home with one needle, once a month.”

In December, Lanthier wrote an open letter to Premier John Horgan and Health Minister Adrian Dix pleading with them to fund the drug.

She admits that while she believes the drug will improve Landen’s quality of life, he may need to take it for the rest of his life. But she said it’s a chance worth taking.

The family has started a petition calling on the government to fund Landen’s drug coverage, along with an online fundraiser to help with the cost of the treatment.

-With files from Michelle Morton

© 2018 Global News, a division of Corus Entertainment Inc.

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