right now, our focus is to continue to get the drug available for more people so we’re pushing at a provincial level to make it more affordable, because drugs are funded provincially. if we needed federal investment in a rare disease strategy, that’s where we would lobby federally.
what are some of the misconceptions about cystic fibrosis?
people think it’s only a disease of the lungs, but cf can impact any external facing organ. people will have gi issues because the mucus doesn’t clear the lungs. it also traps in the digestive system, so you can’t digest your food as well. people will have sinus infections, or reproductive issues — it is a multi-organ disease and i don’t think people know about that.
how did the pandemic affect the cf community?
people with cf have always lived with a pandemic-like situation. they always had to be away from people with infections, they always had to mask, they always had to wash their hands and clean their environment. so in the beginning, they actually did quite well. they did what you and i had to learn how to do.
so there weren’t any challenges accessing clinics or doctors?
people with cf have specialty clinics that our organization worked to start years ago. there are about 40 clinics across the country and they adapted [to the pandemic] pretty quickly with virtual care. the benefit of that is we discovered we can make virtual care or phone consultations work. and where it’s appropriate to keep those, they will.
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