Summer time – it brings so much hope for our family! The hope for new experiences at camp, hope for sunny days at the beach, and hope of new adventures that will come. This summer also brings the hope that our 9 year old son, Alex with cystic fibrosis, will finally have access to Orkambi. Soon, the Canadian Agency for Drugs and Technologies in Health (CADTH) will release a positive or negative recommendation on reimbursement of Orkambi for children over the age of six with cystic fibrosis.
Even though the past few years have been rough for Alex, we know great things are to come and there is always hope. However, Alex’s lung function has continued a downward trend and recently hit an all-time low of 59%. Regardless of doing all recommended airway clearance treatments and taking all available medications, without Orkambi, he continues to decline. Our family hopes Orkambi will give Alex a fresh start and a new ability to fight CF.
Orkambi has been shown to decrease or even stop the progressive and permanent lung damage Alex experiences and slow lung function decline. It could pause Alex’s disease progression long enough for better treatments to come out. Orkambi could mean less antibiotics and the side effects from them. It could help him gain weight and make mealtime less stressful.
With Orkambi, Alex could keep up with his peers in hockey, soccer and on the playground. It could mean more vacation time spent on holidays instead of in the hospital. Orkambi could enable Alex to spend more time playing his piano without doing nebulizer treatments at the same time. Our hope is that Orkambi will help Alex improve his health and spend less time on fighting his disease and more time as a child.
But if the CADTH review is negative, Alex’s future may remain on the same path. He may continue to be admitted to the hospital three times a year. His lung function could continue to decline. Alex will continue to struggle to gain weight. And eventually, he may need a lifesaving lung transplant. It is a hard path to imagine and that is why we cannot lose hope.
The hope for Orkambi is strong all across Canada. Here in Saskatchewan we are working hard to ensure our provincial government knows this medication is needed and has value. As a family, we hope and pray that the CADTH decision is positive and that Alex’s healthiest days are ahead of him!
– Janae Dawson
Janae, Jacob, William, and Alex
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