Oct. 28 was a day Lorna McEwan had waited for literally her entire life.
That was the day she began using Trikafta to treat her cystic fibrosis (CF) — a genetic disorder she was diagnosed with at birth.
“I started noticing changes within the first 24 hours,” McEwan, who was raised near Francis, wrote on her Facebook page. “I could actually take a deep (breath) without having a coughing fit.”
Twelve days later McEwan, along with her parents Frank and Barbara Leier, were introduced as guests in the Saskatchewan legislature by Regina Rosemont MLA Trent Wotherspoon, shortly before a petition with over 1,000 signatures was presented to the government.
The petition was originally circulated with the intent to ask the Saskatchewan government to fund Trikafta treatments for the province’s patients. With the government announcing Sept. 24 that it would begin funding the treatments effective Oct. 1, Wotherspoon noted Nov. 9 in the Legislature that the petition would instead be presented as a thank-you.
McEwan and her parents were also welcomed by Melfort MLA Todd Goudy and health minister Paul Merriman.
“Lorna is the oldest current patient living with CF that was diagnosed at birth and she too is a real CF warrior,” said Wotherspoon. “Frank has been an advocate his entire life. He was the pioneer and the first president of the chapter here in Saskatchewan. He was also the national chair. We’re here today to say thanks to them and to celebrate their victory. These are incredible leaders.
“It’s wonderful news that Trikafta funding has been secured. And we say thanks to these members, these leaders in our community.”
The Government of Nova Scotia’s website states that Trikafta treatments can cost up to $300,000 annually per patient, and a 2020 report from the Canadian Cystic Fibrosis Treatment Society estimated there were 155 Saskatchewan residents living with cystic fibrosis in 2019.
To McEwan though, the early returns have been priceless.
Subsequent online updates have spoken to improved sleep, healthier skin complexion, increased energy and, most critically, the ability to take several deep breaths in a row “without having a coughing fit.” In another update the day after appearing at the Legislature, McEwan shared that she was able to run without coughing as well.
“I cannot believe the new lease on life that I have had. I am amazed,” she told The Forum in an interview.
McEwan was diagnosed with cystic fibrosis when she was 24 hours old and underwent her first surgery within her first two days of life. By the time McEwan was a year old she says she had spent 307 days in the hospital.
Now 61 years old, McEwan explains that there was little hope for her at that time.
“The doctors sent me home to die as they didn’t give me much hope for survival,” she said. “I fooled them. I was placed on vitamin therapy by my mother after extensive research into what would help my system.”
Following McEwan’s diagnosis, her parents became advocates for cystic fibrosis research and the individuals that research aims to help. Among them, had Trikafta or other treatments been available sooner, are several other members of McEwan’s family as well. Two of her five brothers were also diagnosed with cystic fibrosis and both eventually succumbed to complications from the disease. So too did the son McEwan and her husband adopted when the boy was four years old. He eventually passed away in 2019 at the age of 24.
Cystic Fibrosis Canada reported in December 2020 that the median age of survival for Canadians living with the disease in 2019 was 54.3 years, up from 35.5 years just two decades earlier. Complications and their severity can vary substantially among patients, though chronic and progressive lung disease is the reported to be the leading cause of both illness and death in people with cystic fibrosis.
“As a child I slept in a mist tent in which I inhaled mist every night to help break down the thick mucus that was filling my lungs,” McEwan recalled of her own experience. “I underwent lung surgery and had my left upper lobe removed. I am also diabetic due to CF, another condition that commonly occurs.”
She also shared that she developed distal intestinal obstruction syndrome (essentially ongoing blockages of the intestines) as a result of her condition, and further has learned that her body has difficulty absorbing nutrients from the food she consumes, which leads to difficulty gaining and maintaining weight.
For McEwan though, the drug Trikafta is an opportunity to change all that.
Miracle drug arrives
Trikafta was approved by Health Canada in June and is reported to work by altering the F508del-CFTR genetic mutation that Cystic Fibrosis Canada says is found in 90 per cent of patients.
“It is a gene modifier drug in that it fixes the basic defect of the disease, and it is the next best thing to a cure,” explained McEwan.
When McEwan learned about the positive effects of the drug in other places around the world she began advocating to have it made available in Canada.
“I didn’t like the fact that the Canadian Government was dragging their heels on the approval of the drug into Canada,” she said. “We had CF warriors, as I like to call us, dying and the drug that would help 90 per cent of us was within our reach but still not attainable.
“Through letter writing, Zoom meetings, one-on-one meetings, numerous phone calls to the right people and support from family and friends, Trikafta became approved in Saskatchewan and all provinces in Canada. Government support is so important because of the cost of the drug. No one could afford it.”
Despite McEwan’s recent success with Trikafta though, she also believes the fight against cystic fibrosis is far from over and has every intention of continuing on with her own advocacy.
“For others with CF that the drug Trikafta doesn’t help, don’t lose heart,” she said. “We in the CF community have not forgotten about you. We will continue to raise awareness and fundraise to make it a better world for you. No one will be left behind.”
This article is one of several selected from our Nov. 25 edition for online publication in full. To receive more content like this on a weekly basis (rather than whatever we decide to post online whenever we get around to it), subscribe to The Forum today.