When the news of cystic fibrosis medication Trikafta being covered in Manitoba broke, it brought Richard Rebelo to tears.
Rebelo, who lives with cystic fibrosis and who holds annual fundraisers for Cystic Fibrosis Canada, watched the province’s live announcement of the plan Oct. 22 and was immediately overwhelmed, now able to access medical treatment that could very well save his life.
“I was saying a couple days ago that all the medications that I've ever taken, help me fight cystic fibrosis to this point were basically just to help me die a little bit slower. None of them are like Trikafta, where it goes after the root cause of the disease and helps correct it. It's going to be the first time I take something that will help me to actually live,” he said.
“I don’t even know how to explain. It’s not a feeling I can compare to anything else before, that’s for sure.”
The province added two new drugs to the provincial formulary Oct. 22, including Trikafta and HIV pre-exposure prophylaxis (PrEP) and therefore covering costs for users who meet provincial eligibility requirements.
A triple-combination drug, Trikafta has been found to both treat symptoms of cystic fibrosis, including severe side effects, and to greatly increase life expectancy for people who are able to take it. Trikafta has also been found to target a specific genetic mutation that can cause cystic fibrosis, a genetic disorder affecting the lungs, liver, pancreas and other internal organs that affects about one of every 3,600 Canadians.
The drug was first approved for use and sale in Canada back in June for people over age 12.
Trikafta is also very expensive - without costs covered through insurance, a year's supply of the drug can cost around $300,000. Those costs, almost always prohibitive for possible users, will now be covered by the province, as they are already in every other Canadian province.
“Trikafta is the single greatest innovation in cystic fibrosis history and it has the power to transform the lives of thousands of Canadians,” said Cystic Fibrosis Canada president and CEO Kelly Grover in a news release.
“The CF community in Manitoba has fought long and hard to get this drug into their hands. Access to Trikafta will mean longer and healthier lives for so many people, and the ability to plan for a future that many feared they might not live to see.”
Rebelo has been hospitalized several times due to the disease, including twice this year alone, and said he was fearful it would claim him before he had a chance to take Trikafta.
“One of my biggest fears was that the timing would get drawn out, as long as provinces possibly could, to the point where my personal health would decline further,” he said.
“I’ve had a couple of three-week hospitalizations earlier this year. The confidence in my health hanging on was a little bit shaky - you throw in those hospitalizations, you throw in the delays at getting the drug through all the Canadian hurdles and once it finally clears, you had Manitoba dragging their feet. In the social media world where you make contact with other CFers and you hear their amazing good news stories, you also hear the friends that all of a sudden have had a really rough go and may lose their fight, just before Trikafta becomes available to them. That was my fear - something would happen to me and I won't see Trikafta. We're so close now.”
All nine other Canadian provinces, including Saskatchewan, had already committed to funding Trikafta. Federal government programs, as well as territorial formularies for the Northwest Territories and Nunavut, do not cover the treatment.
In the meantime, Rebelo is hosting a fundraiser for Cystic Fibrosis Canada, holding a raffle for a set of handmade beaded mittens made by local crafter Geraldine Beaton-Walker. All proceeds will go to the national group. As of Nov. 9, Rebelo's campaign had raised over $4,150 for the organization.
Rebelo will undergo medical tests with a clinical team in Saskatoon to ensure he is able to take Trikafta, then if results come back, he plans to begin using the medication.
“Hopefully, the next party will be the first dose party,” he said.
