According to a story from CBC News, Jillian Lanthier’s son Landen Alexa was diagnosed with a severe and rare form of juvenile idiopathic arthritis at six years old. Although he was prescribed medication, the treatment has done little to resolve the chronic pain the boy experiences as part of the condition.
Juvenile idiopathic arthritis (JIA) is a form of arthritis with no known cause that is diagnosed before the age of sixteen. The disease is caused by an unusual immune system response in which the body begins to attack and destroy joint tissue. Symptoms of the disease include fatigue, poor appetite, noticeably lessened physical activity, some flu-like symptoms, joint swelling and damage, pain, and limping. The disease is also associated with growth disruption and inflammation in front of the eye. This inflammation can cause permanent damage if untreated. Prompt treatment is essential with this disease to prevent permanent joint damage or growth inhibition. To learn more about this condition, click here.
To resolve Landen’s arthritis more rapidly, his doctor prescribed canakinumab, but this treatment costs $19,000 a month and the drug is not covered by BC PharmaCare. Over the holidays, Jillian learned that her request for coverage by the service was denied. Landen has a severe, systemic subtype of JIA that keeps him from moving is arms, leaving him debilitated. Jillian believes that the denial was due to the significant expense. Landen is one of only ten children in British Columbia that could see improvement with the drug.
In desperation, Jillian wrote a personal letter to the health minister last week, with the hope that he will intervene. She is hoping to at least get coverage for a three month supply to see if the treatment will help her son. While there are cheaper treatment alternatives for Landen’s condition, they have been some cases where the alternatives failed to address the disease. So far, a petition to get canakinumab covered by PharmaCare has garnered around 15,000 signatures since it was started about a year ago.
The Ministry of Health says that drug approvals are subject to committee review. The committee is made up of physicians whose expertise is relevant to the treatment.