Since August, William Côté, a 24-year-old Estrian with cystic fibrosis, has had access to the Trikafta. Although his illness still requires at least two hours of daily treatment, the two new pills he now takes each morning have greatly improved his quality of life.
The effects were seen directly on the first day, he rejoices. The mucus in the lungs has already started to come out early. […] It’s an immediate effect, and afterwards, it’s only good.
I have more energy. You can no longer hear the crackling in the lungs. Usually, when I took in the air, we heard little cracklings, a bit like Rice Krispies when we put milk. We could hear that when I was getting some air, but it was gone in two days. I no longer cough while speaking, he adds.
It’s the feeling of having a new life, another chance.
Her sister Léonie was also able to take advantage of this medicine.
I immediately saw the change in his life. She had a hard time even walking and climbing the stairs at the house. Now, I was home a week later and they went up a mountain in Gaspésie and there was no problem!
The treatment even allowed Léonie to be removed from the waiting list for a lung transplant, as her condition improved.
She was waiting for a lung transplant. It was imminent. They started the Trikafta, and they put her on the waiting list, and then they didn’t put her back on.
Joanie Lévesque, another Estrie woman with the disease, reports similar effects.
The 28-year-old, used to long hospital stays to receive antibiotics, has been taking Trikafta for almost four weeks now.
I haven’t necessarily pushed back or spit out since starting the medication, which is pretty exceptional. In our cases, usually, we cough, we spit every day. It is a change at all.
For the moment on a daily basis, I do not yet realize it, I still do my treatments in the morning as usual. But I cough less, I am less breathless, I am quite active normally, so I do even more!
She indicates that she has not yet experienced any side effects related to the drug.
The equivalent of the discovery of insulin
In Canada, about 4,000 people have cystic fibrosis. Until recently, doctors were only able to treat the symptoms of this genetic disease. The Trikafta, for its part, corrects the basic defect that affects patients, explains Dr. André Cantin, pulmonologist at the cystic fibrosis clinic in Sherbrooke.
When you have cystic fibrosis, you are unable to loosen the mucus. Over the years it becomes so sticky that plugs of mucus are built up in all the pathways that have mucus. The airways, sinuses, intestine, liver, pancreas, he specifies.
It’s a bit like the discovery of insulin for people with diabetes. It’s that big.
Des obstacles persistent
Since September 29, the Trikafta has been reimbursed by the Régie de l’assurance maladie du Québec. Barriers persist, however, for people with cystic fibrosis. Only 85% of them, who have the same defective gene, have access to the drug.
Patients’ lung capacity must also be 90% or less in order to be able to access Trikafta, which means that it is not yet used preventively in children.
The drug, however, represents hope for those who can access it, as attested by Karen Boisier Aguayo, the fiancee of William Côté.
With that, we feel that his life begins again.
Two weeks later [le début des traitements de William], we went up Mont-Orford! For us it’s almost a miracle, she concludes.
With information from Christine Bureau