West Kelowna resident Nicole Stringer is unlike most 28-year-olds that she knows.
For one, she’s had countless surgeries and hospital stays all through her life. The veins on her hands and arms are so scarred that when doctors need to find a vein, they have to do it around her chest.
She has a bucket full of different medications and since February, has been on oxygen therapy full-time.
But as someone dealing with cystic fibrosis (CF), all of this is normal to Nicole.
“I’ve been getting worse with my health… for the last five years, I haven’t been able to live a normal life because I’ve been so sick,” she said.
“And nothing’s working anymore.”
CF has no cure, but different treatments and surgeries target the symptoms to help a patient’s quality of life. Nicole, however, has used so much medication that none of them are helping. She said the only hope is a drug called Trikafta, which is only available in the U.K. and the U.S.
“I have many CF friends down in the States who have been on Trikafta since it came out (in October 2019), and they’re saying it’s the closest thing to a cure.”
“They have gained between 10 to 20 per cent lung function back and they’ve stopped taking a lot of their regular medication because Trikafta changes the makeup of what CF does to the body,” Nicole added.
Besides Trikafta, there are other medications aimed at helping CF patients that are not available in Canada because the country’s strategy relies on trials before mass production. CF affects over 4,200 Canadians, which means a trial pool will be too small to produce the evidence needed before bringing the drug to Canada.
The difficulty in accessing medication is why Nicole and her husband Ben have spent their summer calling local, provincial and federal officials, asking them to consider changing the strategy and the process so it’s easier to access rare disease medications.
Their work has led to new regulations being delayed at the Patented Medicine Prices Review Board (PMPRB), as those new regulations will make it harder for new drugs to come into the country. The goal now is to have more meetings with officials and PMPRB to show how Trikafta (and other CF medication) can help her and other patients and hopefully convince them to let those drugs in.
Ben said he’s doing all this work in the hopes Nicole will experience a normal life.
“For the last five years since her disease escalated, we’ve had more challenges. For me, that’s having a second job as a caregiver,” he said.
“I do it all gladly and happily, but it does take its toll on you. It drains us both, so getting an opportunity to have some relief for her would be massive… it would let her have some quality of life again.”
Nicole said she would like to encourage others who are waiting for life-saving treatment.
“It’s coming. I know this fight seems endless and we’re not winning, but we are. With everyone reaching out and writing petitions and calling, we’re making things happen.”