Children with Systematic Idiopathic Arthritis Fight for New, Pain-Free Drug Access

Originally reported by the Vancouver Sun, children from Langley B.C. are standing up to request access to a potentially life-changing drug as they face the day to day pain onset from treatment for systematic idiopathic arthritis, also known as SJIA. Patients taking treatment for this disease describe the pain as burning under the skin, or someone squirting lemon juice in an open wound.

SJIA is a disease that affects the joints and organs, causing them constant pain. Unfortunately for those affected by this disease, insurances such as Pharacare do not cover canakinumab, a drug that will give these children pain relief. The Novartis-developed drug costs nearly $20,000 a month, which no one can seemingly afford. Many children and their families have continued to submit their requests for an exception to the Ministry of Health, yet they continue to receive denials.

Jaylene Prime, an 11-year-old suffering from the disease is required to take anakinra, a daily injection that is supposed to aid her suffering, but only seems to inject her with excruciating pain. Jaylene decided to write a letter to Premier John Horgan and the Health Minister Adrian Dix this last week to express her feelings. She has dealt with 579 injections of the drug just since mid-2016 and she continues to deal with chronic pain and fatigue. No drugs have worked for her thus far, yet she’s hoping her words can impact someone to make a change.

If Jaylene were approved access to this new drug, she would only have to do 12 injections a year and they’d be pain-free.

The government continues to deny Jaylene, and others like her, access because they do not feel they should expose themselves to a new drug if the current one is working. Yet, Jaylene’s mother is infuriated expressing the extreme side effects it has caused her child. A young 5-year-old boy named Peyton was successful in acquiring the drug and his family expresses his pain-free and active lifestyle. Peyton was lucky enough that his insurance helped in the process.

Hopefully over time, their fight for the drug and bringing all these suffering children to the forefront will help the government realize that having access to canakinumab is not a luxury, but an absolute necessity.

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