Photo/Jaylene Prime – Cassie + Friends
In a move called a major win for all kids and families affected by a rare form of juvenile arthritis, an 11-year old girl has become the first in B.C. to be granted access to an effective but expensive drug through Pharmacare.
Jaylene Prime of Aldergrove has a rare, painful and potentially life-threatening auto-inflammatory disease called Systemic Juvenile Idiopathic Arthritis (SJIA).
She has now been approved for access to a drug called Canakinumab through Pharmacare’s Rare and Autoimmune Diseases Drug Benefit Advisory and Adjudication Committee.
The drug costs $19,000 a month.
It is described as a monthly, painless, injection, that will replace her current weekly regime of 8 injections that “burn like fire” under her skin and over 80 pills per week, including steroids and other medications to help save her organs from the effects of uncontrolled inflammation.
Prime received approval on February 16th and is expected to start the new treatment in the next few weeks.
“The news of Jaylene Prime’s coverage is a major win for all kids and families affected by SJIA,” writes Jennifer Wilson, Executive Director of Cassie and Friends Society.
“It shows that the Ministry and Pharmacare are actively collaborating with pediatric rheumatology experts in BC and now have a transparent qualification process in place for case-by-case access to Canakinumab in severe cases.”
Cassie and Friends is a Vancouver-based charity advocating for the BC Government to drastically improve the outlook of children with SJIA by allowing reimbursement coverage for Canakinumab on a case-by-case basis for the small number of children who need it.
One of those other children is 6-year old Landen Alexa of Sooke who also suffers from SJIA
His mother, Jillian Lanthier, has seen her requests for coverage turned down three times by the same Pharmacare Rare and Autoimmune Diseases Drug Benefit Advisory and Adjudication Committee.
She says that she will be applying for a fourth time.
Photo/Landen Alexa – Change.Org
Ben O'Hara
