StoriesZQowkxAAACIA1Fdl | my-whole-life-changed
My Whole Life Changed
May 20, 2023https://cysticfibrosis.ca/blog/my-whole-life-changed | cysticfibrosis.ca | /blog/my-whole-life-changed
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Despite his cystic fibrosis (CF), Roger is often seen 100 feet up in the air working as a telecommunications mechanic and living an active outdoor life in New Brunswick. But for three months, Roger also participated in an early clinical study of a drug by AbbVie, what he calls a life changing experience. It was a cutting-edge modulator drug thought to correct the basic defect in CF which would be a game changer in cystic fibrosis clinical research if it worked. He was directly contacted by the research coordinator of the trial at the Halifax CF CanACT site, who had previously ensured his eligibility. With a leap of faith, Roger decided to explore the unknown.
“My initial thoughts were the same that goes through everyone’s head. ‘I’m about to become a guinea pig and things may go horribly wrong.’ But you must hope that things go amazingly right.” Roger’s display of strength and bravery was well-placed, as when Roger started the trial, he recalls “my whole life changed.”
The participant’s comfort and reassurance are a priority for each CF CanACT trial. For Roger, the research coordinator provided an abundance of information on both the investigational drug and the study, along with the support of the research coordinator and study physician at his disposal. His full understanding of the drug and the effects he would likely experience allowed him to progress through the study feeling prepared.
After having preliminary blood tests, Roger proceeded to take the drug as instructed by the clinic, who made the process as straight-forward as possible. Any accommodations required for Roger to travel from New Brunswick to participate in the trial in Halifax were supported by the clinic to make the process as smooth as possible.
During regular check-in visits at the clinic, he never felt as if he were just another subject in a study; he was a critical member of the team who contributed something invaluable to the trial.
“My experience was hugely impactful for me,” said Roger. “My life is typical of someone with CF. Although every few years, a new treatment comes out that helps with the symptoms, you come to terms with the feeling that your health is on a low downward trajectory. When I started the trial, my whole life changed, suddenly I was symptom-free. For the first time in my life, I believed I could beat this disease.”
Roger says his participation in the clinical trial means more to him than most people realize. “The only reason I am alive is because organizations like Cystic Fibrosis Canada are pushing research forward, leading to a longer lifespan and increased quality of life for people living with cystic fibrosis. This trial could mean no symptoms for future generations of people living with CF.”
”Absolutely,” Roger responds in an instant when asked if he would participate in another trial in the future. “I only have medication because someone before me participated in a trial. I feel like it is my duty to keep up the momentum and do my part in the fight against cystic fibrosis.” Roger would like any individuals considering participating in a trial to know he had a great experience. “Give it a try, you never know what might happen.”