Rare Diseases

‘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.
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…