Imagine that medication was so prohibitively expensive that there was almost no way you could afford to take it. And because your condition was so rare, insurance companies and provincial health plans had no interest in relieving your burden.
You go on the offensive, advocate for yourself and others with your disease.
For years.
With no result.
And then, one day, almost out of nowhere, you get a miracle.
Such is the case for Moose Jaw’s Cole Pringle, who was recently informed that the newly developed medication Spinraza had been approved for coverage by his insurance company and that treatment for his rare condition – known as spinal muscular atrophy – could begin immediately and would be fully covered.
Not long after, the province of Saskatchewan announced that the drug and the regimen needed for it to take effect would be also be covered by the provincial health plan.
It marks the end of a tireless and remarkable run of advocacy and outright pressure by Pringle, his family, friends and supporters to try and have the medication covered not only for himself but for people enduring the disease all over the province and Canada.
“I just want to thank everybody again in Moose Jaw and all over the place who helped me and everyone who helped out and made this happen for us,” said Pringle, who uses a wheelchair for mobility due to the disease but lives a full life working in Regina. “I don’t know where I’ll end up, but right now the sky’s the limit and I’m willing to put in as much time and effort as I need to to get as much out of it as I can.”
Here are the basics of Pringle’s situation, much of which comes from a Moose Jaw Express article from last October covering a fundraiser for Pringle at Ortley’s Lounge and Grill in the Lynbrook Golf Club.
SMA is a rare neuromuscular disorder that causes progressive muscle wasting and impairs muscular control, eventually affecting the lungs and inhibiting unassisted breathing. Most children born with the disease die before the age of two.
Pringle was diagnosed with an intermediate form of the disease as a baby and has lived with its progressive effects well into adulthood.
“The change is slow and gradual,” Pringle said then of his physical mobility with SMA. “If you compared me to where I was 10 years ago, you'd see a lot of changes when it comes to my mobility and energy levels, things like that. Day to day there are no real changes, but thinking to back to where I was it's a huge change. But I'm quite fortunate since it can be a lot worse for some people.”
But Spinraza gave hope, dramatically increasing strength and movement in patients in cases in Europe and the United States. The problem is the unbelievable cost – each injection is $120,000 and at the time he would have needed the minimum of three doses a year to see an effect, for a total of $360,000. Per year. For the rest of his life.
“It was kind of a thing where everyone I was talking too, just online and whatever, was saying ‘no private insurance is covering this, so don’t bother with it’,” Pringle said in a conversation with MooseJawToday.com on Monday. “Even my neurologist told me ‘don’t bother’ because it was just a waste of time. And we were like ‘okay, fine’. But after months and months of fighting this we just said ‘let’s throw it out there and see what happens, it can’t hurt’ and to our surprise the insurance came back and said this is a covered drug under your plan and basically we’re navigating that now and I’m waiting for my first shot.”
That was just the beginning of the good news, as the province came through not long after.
“W don’t know all the tiny details just yet but the province has agreed to cover everyone in Saskatchewan as long as their neurologist believes they will benefit from that treatment,” Pringle said.
“I really do think our advocacy and trying to get as many people as we could to call in and write in and get as many people as we could to the health minister and make this successful for everybody, that played a major role in that decision.”
The major question now is how much of an improvement Pringle will see.
His regimen will start in the very near future and will involve the first four doses coming two weeks apart each, after which he’ll have follow-ups every four months.
There’s very little concrete data to indicate precise results, but the difference has been seen in other patients. One who Pringle follows online went from near total immobility to gaining control of his neck, an improvement of immense proportions in such a case. For others, it’s been a dramatic increase in strength and mobility and a new lease on life.
“There’s no reason to believe it wouldn’t help and it’s not like the disease changes when you turn 13,” Pringle said. “So there’s no data there but there is a lot of anecdotal stories from people in Europe and States who have been getting it, adults who are older than me who are seeing good results… There are lots of videos of people who are showing the different weight they can lift, I can maybe lift a couple of pounds, but I’ve seen people go from 10 pounds to 30 pounds overnight. So it’s like it seems to be there’s a big jump after two or three doses and then it’s a gradual increase after that.”
Whatever improvement he sees will go a long way to research on the drug and his disease, as his neurologist has made an arrangement with Biogen, manufacturer of Spinraza, to use his data as a case study.
“I’m going to be the first three, four or five people over the age of 12 that are getting this drug in the country,” Pringle said. “That’s another reason I want to keep working as hard as I can and get as much out of it as I can because there are other people in this country who might benefit from that data, so I want to do the best I can and hope they get the treatment from what I provide.”
Right now, Quebec and Saskatchewan are the only provinces covering the drug, and Pringle plans to use his newfound strength to help get it part of drug plans throughout Canada.
“I’m overjoyed that things have worked out for me and I’m hoping I’ll be able to help others who need it all across the country,” he said. “There’s still lots I can do and if I can help more people get the treatment they need, then I’ll be more than happy.”
