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)

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

Just Posted

Jill Mackenzie carefully replaces books on the shelves at the Houston Public Library. (Angelique Houlihan photo)
District approves annual library grant

Craft kits featured for summer reading club

The tradition of Houston Christian School grads giving Bibles to incoming kindergarten students will take place this year, but outdoors and in a modified fashion. (File photo)
Houston Christian School grad day is June 24

Grads themselves have set tone for the day, says teacher

Scott Richmond will be starting as the new vice principal for HSS and TSE. (Submitted/Houston Today)
Houston gets a new vice principal

Scott Richmond takes over from Dwayne Anderson who moved to Smithers

A Pacific Salmon Foundation grant of $3,000 is going towards the tree plantations. (Cindy Verbeek photo/Houston Today)
550 trees planted in Houston through A Rocha

Houston Christian School students and volunteers help with the tree planting

Currently the Houston station has 16 paramedics, two ambulances and one community paramedic vehicle. (File photo)
Retirement of longtime paramedics worries Houston community

“No loss of service,” assures BC Emergency Health Services

Marco Mendicino, Minister of Immigration, Refugees and Citizenship during a press conference in Ottawa on Thursday, May 13, 2021. THE CANADIAN PRESS/Sean Kilpatrick
Canada to welcome 45,000 refugees this year, says immigration minister

Canada plans to increase persons admitted from 23,500 to 45,000 and expedite permanent residency applications

Emily Steele holds up a collage of her son, 16-year-old Elijah-Iain Beauregard who was stabbed and killed in June 2019, outside of Kelowna Law Courts on June 18. (Aaron Hemens/Capital News)
Kelowna woman who fatally stabbed teen facing up to 1.5 years of jail time

Her jail sentence would be followed by an additional one to 1.5 years of supervision

Cpl. Scott MacLeod and Police Service Dog Jago. Jago was killed in the line of duty on Thursday, June 17. (RCMP)
Abbotsford police, RCMP grieve 4-year-old service dog killed in line of duty

Jago killed by armed suspect during ‘high-risk’ incident in Alberta

The George Road wildfire near Lytton, B.C., has grown to 250 hectares. (BC Wildfire Service)
B.C. drone sighting halts helicopters fighting 250 hectares of wildfire

‘If a drone collides with firefighting aircraft the consequences could be deadly,’ says BC Wildfire Service

A dose of the Pfizer-BioNTech COVID-19 vaccine is pictured at a vaccination site in Vancouver Thursday, March 11, 2021. THE CANADIAN PRESS/Jonathan Hayward
NACI advice to mix vaccines gets varied reaction from AstraZeneca double-dosers

NACI recommends an mRNA vaccine for all Canadians receiving a second dose of a COVID-19 vaccine

A aerial view shows the debris going into Quesnel Lake caused by a tailings pond breach near the town of Likely, B.C., Tuesday, Aug. 5, 2014. THE CANADIAN PRESS/Jonathan Hayward
Updated tailings code after Mount Polley an improvement: B.C. mines auditor

British Columbia’s chief auditor of mines has found changes to the province’s requirements for tailings storage facilities

A North Vancouver man was arrested Friday and three police officers were injured after a 10-person broke out at English Bay on June 19, 2021. (Youtube/Screen grab)
Man arrested, 3 police injured during 10-person brawl at Vancouver beach

The arrest was captured on video by bystanders, many of whom heckled the officers as they struggled with the handcuffed man

Patrick O’Brien, a 75-year-old fisherman, went missing near Port Angeles Thursday evening. (Courtesy of U.S. Coast Guard)
Search for lost fisherman near Victoria suspended, U.S. Coast Guard says

The 75-year-old man was reported missing Thursday evening

Most Read