Man finally gets his life-saving drug
'Frustrated' John Mackenzie says funding approval process must be streamlined
John McFadden
Northern News Services
Published Friday, October 10, 2014
SOMBA K'E/YELLOWKNIFE
A man is calling on the GNWT to speed up the process for approving coverage of expensive - but potentially life-saving - drugs.
John Mackenzie, 62, has been diagnosed with tumor necrosis factor receptor-associated periodic fever syndrome, better known by the acronym TRAPS.
He said he was prescribed the drug canakinumab - better known by its trade name Ilaris - back in April.
However, due to delays in approving his coverage and actually getting the drug to Yellowknife, he didn't actually receive the prescription until Oct. 3.
Mackenzie said the medication costs $18,000 per injection.
He said he has to take an injection every six to eight weeks, which amounts to more than $100,000 a year.
He gave himself his first injection last Friday, the same day he received the drug. He said he is already feeling better.
However, the past six months have taken a toll on him, his family and his employer, he added.
"It's the not knowing whether you are going to be covered that's been hard," said Mackenzie.
He received notification Sept. 18 from his Montreal-based specialist, Dr. Chris Tsoukas, that he'd finally been approved for coverage, but it still took more than two weeks before he actually got the prescription from Sutherland's Drugs, Mackenzie said.
"I never received any formal notification from the GNWT that I'd been approved for coverage," he said.
But he was eventually contacted by pharmacist Steve Gwilliam at Sutherland's and was told he had been approved.
However, that didn't mean Mackenzie could get his first dose.
"I have to send off a test bill to Alberta Blue Cross (the insurance provider) to make sure the prescription is covered," Gwilliam said. "Then I have to make arrangements for the drug to get here in 48 hours while still being kept refrigerated. If it freezes or drops to room temperature, or if the drug is, in fact, not covered, then I'm on the hook for $18,000," Gwilliam said.
Range Lake MLA Daryl Dolynny, who is also a pharmacist, confirmed that process.
"It's complicated, but that's what the drug store has to go through to make sure they don't end up stuck with a huge bill," Dolynny said. "But the bigger issue here is leaving NWT residents in the dark when it comes to expensive drug coverage. We need what's known as a catastrophic drug program, which is used in other jurisdictions."
That type of program takes patients with serious medical conditions who are in need of expensive drugs out of the usual system and speeds up the process, said Dolynny.
"They're busy fighting their disease, it's not fair to make them fight the bureaucracy at the same time. Delaying their coverage and leaving them in the dark over whether they will be covered is just an added burden for the patient. This is not the most expensive prescription I've seen in the NWT, but it's up there." said Dolynny.
It wasn't until Aug. 18, five months after he'd been prescribed the drug, that Mackenzie said he received a letter from Health Minister Glen Abernethy stating that a decision is pending on his request for coverage of the drug.
In the letter, provided to Yellowknifer by Mackenzie, Abernethy stated that the drug was not listed on the non-insured health benefits drug benefit list and required a case by case review.
He stated that the request for coverage had been submitted to Alberta Blue Cross for consideration.
That agency provides coverage for NWT residents once they turn 60.
Mackenzie said his father died from the autoimmune disease in the early 1970s at the age of 58.
He said he believes only about 60 people have been diagnosed with the syndrome worldwide.
"It's a very rare genetic disorder, which in my case, was inherited from my father," he said. "I suffer bouts of extremely high fevers and incapacitating joint pain. I become as rigid as an ironing board."
Mackenzie said the disease causes his liver and kidneys to swell and leaves him with a bloated stomach and a painful rash. He said he will really be in trouble if the disease starts to attack his heart.
He has had TRAPS for about seven years.
"Doctors here at home couldn't diagnose me. I was referred to several specialists in Edmonton who were stumped as to what was causing my condition," he said, adding that he has flown to Montreal at his own expense to see a specialist - a colleague of the doctor who treated his father.
He said he has been prescribed drugs in the past that have worked to treat the disease, but eventually develops a tolerance and has to be prescribed a new drug.
"That's the case now. I'm injecting myself twice a day with a drug that is no longer very effective. It costs about $1,000 a week and is covered."
Mackenzie said he'd been doing his best to manage his condition without his new prescription, but said it was frustrating for him and everyone around him.
"I either have to leave work during the day or don't go in altogether," he said. "I could have gone back to Montreal where I was diagnosed and be treated as an outpatient, but my home is here, my job is here, my family is here. I need to be able to take this drug here and remain in Yellowknife."
Now that he finally has his prescription covered, Mackenzie feels he has a much better handle on the process involved in obtaining an expensive drug not on the list of approved drugs for coverage.
But he said he thinks the system must be streamlined to prevent long, drawn out delays like he's just experienced.
"I wouldn't wish what I just went through on anyone," he said. "This whole process has taken a toll on me, my employer and my family.
"I'm just glad it's over and look forward to feeling better."
