Co-presence
Most inpatient and daily home treatments aim to support lung health and slow the progression of CF. Genetic modulators are a relatively new class of medication which ‘fix’ the expression of the gene that causes CF. They are effective for 90% of cases of CF, and options for the 10% with rarer genetic mutations are being studied. New generations of people with CF are treated from as early as the womb, and are likely to never experience CF symptoms. Side effects of genetic modulators are still being discovered, but are vastly considered preferable to the faster progression of CF experienced without them.
Genetic modulators Orkambi and Symdeko are two of the precursors to Trikafta. Trikafta is the most effective modulator medication for CF so far, as well as the best tolerated in terms of side effects. More people now take Trikafta than ever took Orkambi or Symdeko.
Taking our first doses of Trikafta is an immensely meaningful moment in our lives. That moment holds so much hope, grief, optimism, and layers of other confusing emotions. There is before, and after. Before has a known prognosis, while after is a whole new chance at life.
I wanted to document this moment to celebrate and remember it. I also wanted us to be able to share this moment with each other. This section consists of five people including myself taking our first doses of Trikafta. Two of us, including myself, recorded ourselves. One person had a friend record him, and I was able to be co-present in a recorded video call for the other two.
“My hope is they [future generations] won’t know the same CF we know”
Richard
The First Dose
“When I first heard the news that it was approved in Canada & that we had coverage I could not stop crying. Think I cried for a week straight.
It is very very hard to explain the profound overwhelm of it all.
It's happening!!!!!!!!!!
We have a second chance at life!!!!!!!!!!”
Michelle
Richard
Richard celebrated taking his first dose with his wife and close friends. He wanted to spend the moment in person, but was happy to share a recording for this project.
“I don’t think it’s a game changer like many people call it. The game is still the same, it’s still us against CF…no one has ever won. Even with Trikafta, CF will still win every time. We have to keep fighting for ourselves, and for everyone that Trikafta doesn’t work well for or can’t take it”
“Orkambi and Symdeko couldn’t get me off the oxygen, but I'm hoping Trikafta can. I have high expectations with this med”
Steve
Steve’s Trikafta was delivered a day earlier than expected. We had a scheduled video call for the next day, but once it arrived, he couldn’t wait!
We’d all had to wait for so long already, for federal and provincial approval, for individual approval, and then delivery delays. Progressive diseases don’t wait for approval deadlines, efficacy reports, or funding delays. Our collective sense of urgency to get started on Trikafta was exemplified in Steve’s actions. He filmed himself taking his first dose for this project.
Amy
“Do you have like a thing that you said you will do once you feel better?
Example. I live in Gibsons on the most intense hill ever. And my claim is that I will walk it
But then they told me I’m accepted. I’m like oh shit.
Do I actually have to do it hahaha
Omg it’s like a 21 % grade hill. I’m not sure exactly what that means. But it’s insane
It feels like your car will flip backwards while you drive up
Anyway. It’s my goal”