There was a huge sigh of relief at the LaFramboise house upon hearing the news that the Alberta government agreed to provide coverage for Trikafta, a new and expensive drug treatment for cystic fibrosis.
“Oh, my goodness … it was a huge relief. We’re very excited over here,” offered Kim LaFramboise.
Ever since he was a year old, Kim’s son Carter has been managing his cystic fibrosis with a variety of medications and treatments. The disease hasn’t been as bad for him as it has for many others, but it still means two to four hours of treatments — a combination of breathing exercises, inhaled medications, and physiotherapy — every day just to keep him healthy.
Last Friday, the province announced it would join Ontario and Saskatchewan to cover the cost for eligible patients to receive Trikafta, a three-drug pharmaceutical therapy with a roughly $300,000 price tag, under their respective publicly-funded drug programs. The Pan-Canadian Pharmaceutical Alliance, the intergovernmental agency that negotiates the prices of medicines, previously reached an agreement with Trikafta manufacturer Vertex Pharmaceuticals on its costs and the conditions for which it would be covered.
Trikafta only works for those whose cystic fibrosis is indicated with a F508del CFTR mutation, the most common genetic mutation that causes the disease. The three provinces that have listed the drug, as yet, have not specified exact eligibility criteria. In June, Health Canada finally approved the drug treatment for people aged 12 and older after a long campaign to make it available in this country. It was approved by the U.S. Food and Drug Administration one year ago.
Local advocate Sharon Stepaniuk was at the forefront of pressuring the government to expedite the approval process. Though Trikafta wouldn’t be effective on her two children who have cystic fibrosis, she is still heavily involved in the community and knows the suffering the drug can ease.
“I've seen first-hand how life-changing these drugs can be for people. The fact that [there is] this approval for a drug that will treat 90 per cent of people with cystic fibrosis in Alberta 12 and up, it's just life changing,” she said, estimating that more than 300 people in the province could benefit from the new therapy.
She said Trikafta is the first drug to be proactive in treating the root of the disease, whereas previous treatments have only been able to target the symptoms.
“So many children and youth will not have to experience the same level of decline that previous generations have had to see. It just changes the face of the disease. So, yeah, [I'm] beyond overjoyed and grateful and everything.”
There is still “a little bit of red tape” before Carter can have Trikafta in hand, however. Kim expects it might be a few more months — they are in line for a drug many are saying will revolutionize treatment for up to 90 per cent of patients, according to Cystic Fibrosis Canada.
“Having a child with CF is always a certain amount of stress, and so having Trikafta now is taking some of that off our shoulders. We're hoping that it'll give him many more years of healthy life. It's the first medication that actually targets the disease instead of just the symptoms. It'll be a game-changer, I think,” Kim said.
