StoriesZQowkxAAACIA1Fdl | a-life-changing-referral
A Life-Changing Referral
December 14, 2023https://cysticfibrosis.ca/blog/a-life-changing-referral | cysticfibrosis.ca | /blog/a-life-changing-referral
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Edmonton to Vancouver, Vancouver to Edmonton. In 2019, Isaiah, who lives with cystic fibrosis (CF), was at the airport every two months travelling from home in Edmonton to participate in an antibiotic study at the BC Children’s Hospital in Vancouver, a distance of 1,200 kms. He was referred to the study by his clinic team in Edmonton and was then contacted by Alam, the research coordinator from the BC Children’s Hospital CF CanACT site. Even prior to agreeing to participate, Isaiah recalls having numerous email exchanges with Alam where they got to know each other, and Isaiah was able to learn about the clinic, the team, and the study that he would participate in.
Isaiah didn’t know what to expect going into a clinical trial, but the research team provided him with all the information he needed to ease his uncertainty. The team walked through information about the drug, including any side effects, instructions on its use, and more. “Everything was laid out in front of me in case I needed it through the process,” he says.
Isaiah was required to fly to Vancouver bimonthly for his clinic visits as part of the trial. He coordinated the flights based on his convenience and schedule, and was reimbursed for his travel expenses, including the flight tickets, hotels, and food during his stay. His regular clinical care continued in Edmonton; yet the additional visits in BC for the trial was a responsibility that he was willing to take on. “The clinic made it so accessible and easy for me to be a part of the trial,” said Isaiah. “With their help, I was able to contribute to the advancement of CF medications and research. I felt honored to participate, as I was advocating for those like myself through this study.”
Isaiah’s experience as part of the trial was simple, comfortable, and more relaxed than he had envisioned. His role consisted of a simple scale-based questionnaire about his health, along with blood work and pulmonary function tests (PFT). The clinic involved him as much as possible in the trial process. “They did more than give me instructions on the drug and brush me off. They wanted to know how I felt on top of it all, which made me feel very respected in the clinic”, Isaiah shares. Isaiah was reassured by the clinic team with understanding, creating a safe, and enjoyable process for Isaiah.
“It was exciting to be a part of. With a less prevalent disease like CF, it feels as though there is less pressure to advance the technology, medication, and knowledge related to it. However, my participation in the clinical trials helped me learn that there was progression and movement forward in the fight against CF.”
His experience has given him a new appreciation for the work being done to improve the lives of Canadians living with CF. “The whole experience has made me realize the immense, ongoing team effort in the fight against CF in Canada. Knowing that there are a lot of people involved in CF research is very encouraging. It was amazing to feel like I was a part of something greater for the CF community. I am not surrounded by my compatriots also battling CF.”
“I’m very proud to have contributed to a clinical trial”, said Isaiah. “To me, it means that I have contributed something great to the CF community, and I would 100% participate in another clinical trial given the chance”.
