After ‘getting loud’, the First CF Patient in Canada is approved for Compassionate Care for Trikafta

Posted on Global news: https://globalnews.ca/news/6459308/pickering-mother-approved-miracle-cf-drug/

A special thanks to Frazer Snowden for capturing this moment and always supporting the CF Get Loud movement.

“You ready?” her husband asked. “I’m ready,” she said, before popping two pills in her mouth.A Pickering, Ont. mother fighting cystic fibrosis has received her late Christmas wish.

Stephanie Stavros is the first person in Canada to be approved for compassionate care for Trikafta. Global News was there the first time she took it.

“Are you shaking?” Stavros asked her husband, Jim, as she prepared to take the treatment for the first time.

“Yeah, a little bit,” he replied.

It’s the moment Stavros and her family have been counting down for decades.

Her husband gave her a glass of water to down it and they embraced, rejoicing that from this moment on they may finally have hope.

Even after she took the pills, it still hadn’t hit her.

“I’m in shock. It’s only 50 per cent sunk in,” she said. “I mean, it’s just a massive moment.”

Jim, who has stood by her throughout her battle with the disease, was ecstatic to finally be here.

“We’ve worked so hard to keep Stephanie healthy … because we’ve dreamt that one day there would be something like this,” he said.

Stavros, 36, has been fighting this battle for more than 30 years. Just last month, she was pleading for help in obtaining the Trikafta, which seemed like an impossible feat at the time. But she had a vision and was determined to make it happen.

“I had this very clear vision that my Christmas decorations were still up,” she told Global News, describing how she imagined this moment.

“I was sitting here with a cold glass of water in my hands, taking beautiful pills.”

And to get those beautiful pills, she pulled out all the stops, with a goal to get the treatment by Christmas.

“I have been advocating, sending care packages to the company and writing letters to the government and officials,” she detailed. “I’ve just been stomping the ground 24/7 doing this.”

“I’m in awe,” Jim said. “This is one of the things I like the most about Steph — she’s so inspirational.”

She wrote letters to executives and other top staff of Vertex, the company that makes Trikafta. Then, two weeks ago, she got the news from her pharmacist that she was approved.

“He came up to me and he said, ‘we’ve seen all your hard work and the news reports,'” she said. “‘We just wanted to say it worked.'”

“I just said to clarify, ‘can you repeat that? I’m approved from Vertex?’ He said, ‘yes you’re approved for compassionate care.'”

That means Stavros will be given this drug — whicih normally costs up to $35,000 a month or $400,000 a year if purchased — for free, for life.

Trikafta was only recently approved in the United States, having received the green light by the Food and Drug Administration in October 2019. But the company still has yet to submit Trikafta for approval to Health Canada.

Stavros says once the so-called miracle drug takes hold, she could see a drastic change in her life.

“It’s supposed to reduce the rate of infection by 50 per cent,” she says, a transition that she thinks will help her immensely.

“It’s supposed to just help the quality of life be much better.”

Officials with Cystic Fibrosis Canada say it could take years for Canada to see the drug. Kim Steele, government relations with CF Canada, told Global News last month that the time is now for Canada to build a rare disease strategy.

“We need Canada to step up and bring these rare disease drugs in through a separate process,” says Steele.

For Stephanie, meanwhile, she, her family and her friends can finally move forward.

“All of us, not just Stephanie, our friends and family, we can all breathe a sigh of relief now because this is something we have been waiting for for so long,” Jim said.

Although she feels like she won the lottery. Stephanie says she will now fight for others battling the disease.

“There are at least 90 per cent of people that need access to this drug. And I will not stop until we all have access.”

Her road to recovery will be a process. But her most important goal, she says, is to live life to the fullest.

“My biggest goal is to be able to laugh and dance with grey,” Stephanie said.

“That is my biggest goal.”