Nicole and Ben Stringer have spent the summer working to bring awareness to life-saving medication for cystic fibrosis patients. (Twila Amato - Black Press Media)

‘Nothing’s working anymore’: West Kelowna woman shares her fight with cystic fibrosis

Cystic fibrosis is a genetic disease that affects the lungs and intestines among other organs

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.”

READ: Local apparel collection funds free child therapy program


Twila Amato
Video journalist, Black Press Okanagan
Email me at twila.amato@blackpress.ca
Follow me on Twitter

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

Sooke RCMP searching for two people, reported missing on Sept. 10

Alannah Brooke Logan, 20, and Beau Richard Santuccione, 32, last seen on Otter Point Road

New branch of Royal BC Museum to be built in Colwood

New faclity in the Royal Bay development will house collections, archives and research department

Victoria man plans 30-hour walk to raise funds for vulnerable youth

Take a Hike engages youth in intensive, clinical counselling and outdoor experiential learning

Opponent of proposed Sidney cannabis store calls on councillors to heed health authority advice

Council to consider revised application from Happy Buddha Cannabis on Sept. 28

Metchosin inmate sentenced to 12 months in jail for escaping custody

Sentence to be served concurrent to a life sentence he was already serving

3 new deaths due to COVID-19 in B.C., 139 new cases

B.C. confirms 40 ‘historic cases,’ as well

POLL: Do you plan on allowing your children to go trick or treating this year?

This popular annual social time will look quite different this year due to COVID-19

Supreme Court Justice Ruth Bader Ginsburg dies at 87

The court’s second female justice, died Friday at her home in Washington

Comox Valley protesters send message over old-growth logging

Event in downtown Courtenay was part of wider event on Friday

VIDEO: B.C. to launch mouth-rinse COVID-19 test for kids

Test involves swishing and gargling saline in mouth and no deep-nasal swab

Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

Young Canadians have curtailed vaping during pandemic, survey finds

The survey funded by Heart & Stroke also found the decrease in vaping frequency is most notable in British Columbia and Ontario

B.C. teachers file Labour Relations Board application over COVID-19 classroom concerns

The application comes as B.C.’s second week of the new school year comes to a close

Most Read