There’s little question that advances in medical science and medications have made lives easier and more manageable for cystic fibrosis patients all over the world.
But it remains a disease without a cure, and the current range of drugs used to it do that and only that – offering a small break from the worst of the symptoms, any of which could worsen at any time and without warning.
Now imagine there were medications currently available that not only improve the lives of those with cystic fibrosis, they can actually reverse the disease, increasing life expectancy and offering hope for those who have to deal with the debilitating symptoms on a daily basis.
As it turns out, those medications exist – according to the Canadian Cystic Fibrosis Treatment Society, the drugs Kalydeco, Symdeko and Orkambi are three currently approved by Health Canada and a fourth, Trikafta, is even more promising and is in the process of approval – but none are currently covered by Sask Health, making their availability prohibitive in the province due to the high cost.
That’s where Kimberly Evans and daughter Cassidy enter the equation.
The Evans family is well known in Moose Jaw for their cystic fibrosis awareness fundraisers, the most famous of which is Cassidy’s Lemonade Stand.
Cassidy, now 12 and continuing to thrive in spite of her battle with cystic fibrosis, started a small drink stand back in the mid-2010s as a fundraiser for CF, only to see the project blow up into a full-on campaign that now includes a lemonade truck that tours the province, a website filled with information on her current projects and CF information, and further fundraisers that include the popular SOAR for Cystic Fibrosis.
Kim Evans has been a tireless supporter of her daughter the whole time, and that includes the current situation surrounding the unavailable lifesaving medications.
“It’s one of those things were Cassidy already does two to three hours a day of treatments and therapies and medications, just trying to keep her body at bay,” Evans said from her home in Saskatoon. “They’re bandaid therapies, there’s nothing that’s making her CF better with any of the stuff she’s currently doing, she’s just trying to keep the disease at bay.
“These new medications are actually shown to reverse some of the CF symptoms in the body.
That’s the part for me, I can’t sleep at night unless I know I’m doing every single thing I can for her, it feels like a golden carrot being dangled in front of us that this medication exists and I know how much it will change her life and it’ll extend her life.
“But we can’t access it right now, so the fight continues.”
Similar situations
It’s much the same situation that Moose Jaw residents Shailynn Taylor and Cole Pringle found themselves in as they attempted to have lifesaving medication approved by Sask Health to battle spinal muscular atrophy. That battle was eventually won, with the government covering costs for the drug Spinraza in April of 2019.
Evans is hoping the same happens for Cassidy and cystic fibrosis patients all over Saskatchewan.
“It’s challenging because Canada on a worldwide level is known for how amazing our healthcare is, it’s one of our claims to fame, we have free healthcare and there are a lot of incredible things about our system,” Evans said, briefly pausing to, coincidently, receive Cassidy’s pharmacy delivery. “But we have a huge missing piece in regards to rare diseases in Canada.
“Most people aren’t aware of this, and fortunately, most people who don’t have anything to do with a rare disease or somebody specifically they’re connected to, they don’t have to be aware of this. But with Cassidy, it’s become a huge point of concern as a parent making sure she had access to the best care possible.”
Evans has been in regular contact with provincial health minister Jim Reiter, who has thrown his support behind their cause and is seeking a solution.
CF and COVID-19
Cassidy, meanwhile, soldiers on.
A daily regimen of inhalers and oral medication have her living a fairly normal 12-year-old life, even in the age of the COVID-19 pandemic. Naturally, the Evans family is plenty careful in that regard, knowing that catching such a potentially lethal disease could have devastating effects for someone with CF.
Interestingly enough, the connection between COVID and cystic fibrosis is unique in that many of the same symptoms present in an infection by the novel coronavirus are present in CF. Thing is, while COVID-19 goes away over time, cystic fibrosis is for life.
“That’s the irony of it this whole time,” Evans said. “People are so scared of this disease, and us in the CF community are like ‘well this is every single day for our kids, this is their normal, it doesn’t go away.’ There’s no cure, no vaccine, she will always have this, and these drugs are as close to a miracle as you’re ever going to see until the day you can remove all your genes and get new genes.”
Summer plans
With COVID-19 still an issue in the province, the Evans family plan to have a low-key summer, keeping the lemonade truck off the road and holding off on any major fundraisers like the SOAR event.
“We’re taking it pretty safe,” Evans said. “We were supposed to be in Moose Jaw with the lemonade stand at the end of May, but unfortunately because of all of this we weren’t there. So we’re still trying to think creatively about how we’d be able to pop in and do door-drop lemonades or something along those lines and how we’d make it work. And obviously Cassidy’s health is the top priority, so we’re always doing our due diligence there.”
The family moved to Saskatoon three years ago, but still hold Moose Jaw close in their hearts.
“The Moose Jaw community is bar none unlike anything we’ve ever experienced, and we’re so grateful to be able to come back there and feel connected to Moose Jaw.”
