WATCH: A Sooke mothers nightmare continues as her son is denied coverage for a drug that could give him back his childhood. Luisa Alvarez gives us an update on Landen’s fight for Canakinumab, a $19,000 per dose drug as he battles juvenile idiopathic arthritis.
As six-year-old Landen screams in pain his mother, Jillian Lanthier has to read a letter from BC Pharmacare once again denying him coverage for Canakinumab.
” I don’t know what to say to him anymore. I am sorry? He doesn’t understand the government not funding it or anything,? said Lanthier.
The $19,000 dollar per-dose drug that could give her little boy a life without so much pain. Landen loses mobility in his arms from his wrists to his shoulders.
?At that point, he is unable to go to the bathroom by himself he is unable to bring a cup or a fork to his mouth and he screams out in pain,” said Lanthier.
Clear signs his treatment isn?t working. Lanthier showed her son’s doctors the videos of him suffering and they agree, the treatment isn’t working. His doctor even writing BC Pharmacare a detailed letter stating Landen was not responding to treatment and was a good candidate for Canakinumab. But still, he was denied coverage.
Now, Landen is on chemotherapy to manage the pain and his mother says watching him go through something like this is unbearable.
“I just look at it like they are looking at the price tag and not the long-term effects of the chemo,” said Lanthier.
BC Pharma care would not give us details on their reason for denial due to patient confidentiality. But in a statement says specialist look at what treatments have been explored already and what treatment options are available that are covered. In this case, it would be Anakinra it requires a daily injection and Landen’s doctors have already said he is not a good candidate.
” When Landen gets an IV in the hospital he is sedated, he is severely afraid of needles because of everything that’s happened,” said Lanthier.
On top of that administering the drug, its self-causes excruciating pain.
“Upon injection, the actual medication burns going into the child,? said Lanthier.
Unlike Canakinumab which is a once a month injection that does not require an IV and is given at home, virtually eliminating all their hospital stays and eliminating the need for a port to be surgically inserted into his chest to facilitate IV’s.
Having run out of all other treatment options Lanthier is desperate for a chance to see if Canakinumab will work she is advocating for a three-month trial approval.
“I am Landen’s mom I am his biggest advocate, his biggest cheerleader and I am the one that has to see him suffer.”
But the more she pushes to help her son the more Lanthier says she feels the government is failing him.
“John Horgan and Adrian Dix they must have grandchildren or children of their own and I lay awake and I wonder if this were their child would the medication be approved? And I can’t help but think the answer would be yes,” said Lanthier.
Denial after denial Lanthier says this fight is not over.
“No parent, no grandparent would like to see their child go through what I have to see Landen go through,” said Lanthier.
A go fund me page for Landen has been set up and a petition is circulating online pleading with the B.C government to look at coverage on a case to case basis. It is headed by the Cassie and Friends Society for Children with Juvenile Arthritis who have been advocating for other families and children affected by SJIA.