While Alberta and Saskatchewan have different supports for MS patients and caregivers, some people feel that more work needs to be done on both sides to make life a little easier for sufferers of the disease.
Nicole Rolfes lives in Lloydminster, Alta., and was diagnosed with relapsing-remitting MS in 2012. Since then, the exhaustion caused from the disease has made it difficult to hold down a full-time job.
“My husband makes enough that I could stay home, but that’s not the case for everybody. And so people are forced to work and then their sickness will get worse because they’re pushing too hard,” said Rolfe. This means that in many workplaces, people who struggle with MS are eventually let go.
That’s exactly what happened to her. However, Rolfe found a friend in Ean Bull, CEO of Dynasoft Communications, whose wife, Karen Colquhoun, was also stricken with MS. Understanding the challenges that come with MS, Bull has employed Rolfes.
“At this point I have (the disease) under control,” she said. “I can work, I do know my limits, and I’ll step away when I need to.”
Though Alberta has made strides in the Way Forward Plan, Rolfe still struggles in a number of areas while living on the Alberta side of Lloydminster. First, she has to find out what medication has been approved on her benefits and in order to do that, she must first apply. After the wait period, she may discover that the medication she wanted is not covered.
“Tecfidera wasn’t going to be approved on my benefits, which means it would have cost me $1,320 for 20 tablets. And I take two tablets a day,” said Rolfes. “So, you’re looking at a little over $60,000 a year. Some of it would be covered, some of it you’d be paying out of pocket.”
Couple that with the uncertainty of the side-effects and having to hold down a full-time job and a picture begins to form on the state of Alberta MS support systems.
However, the Saskatchewan side of Lloydminster presents a whole new set of problems when it comes to MS support.
Bull is a caretaker for his wife, but despite the situation, he feels fortunate that his success with Dynasoft can help them take care of the massive expenses associated with caregiving and medication for MS in Saskatchewan.
“Last year, Dolly’s medical expenses were about $24,000,” said Bull, but he still feels he’s been fortunate with the success of his company, which allows them to make a life together.
“I’ve been fortunate. I’m not whining because it’s bad – it is bad – but we can get by,” he said. “But what about if you work at Walmart? Or Tim Hortons? ... You’ve got to decide, will I pay rent this month or do I buy the medication, or that walker that she needs? What do I do?”
Saskatchewan came up with the Saskatchewan Special Support Program (SSSP), to help offset provincial drug coverage and the costs associated to it, said Bull. But those benefits were made obsolete when insurance companies across Saskatchewan began to force clients into applying for the program.
“So, if you don’t apply, the insurance company cuts you off. And then if you do apply and your income is over a certain limit, you don’t get entered into the special support program,” said Bull.
There are also the logistics of MRI scans. If one receives a scan in Alberta, but they live in Saskatchewan, the must travel to Saskatoon to get the image analyzed. Saskatchewan also has a severe shortage in neurologists, said Bull, creating even more complications.
Rolfes, who used to live in Manitoba, commends the province for it’s incredible strides in MS support systems.
“In Manitoba, the medication would be covered through Pharmacare,” said Rolfes. “With Pharmacare, it didn’t matter what kind of medication you got – they would cover it.”
“They’re the ones that stepped up first,” said Bull of Manitoba. “They supplied MS patients with free medication. That was a huge step up. That’s a province that may not be as wealthy as Saskatchewan and Alberta, but they worked out a way of doing it. On top of that, they did the refundable caregiver tax credit.”
Despite living on two different sides of Lloydminster, Bull and Rolfes agree – both provinces should take their cue from Manitoba, and adopt Pharmacare and a refundable caregiver tax credit.