A New Brunswick woman with cystic fibrosis is calling for changes to how one of her medications is offered.
Leah Brennan is set to move to Ireland next week to pursue a physiotherapy program, but isn’t able to get an extended supply of one of her medications.
“It’s super frustrating because I, in the back of my mind, I’ve already had cystic fibrosis as a roadblock and a barrier,” she said.
“I feel like I’m stuck again.”
Brennan has been taking Trikafta for nearly three years, which has helped eliminate her symptoms. When she and her sister — who also has cystic fibrosis — were born, their life expectancy was about 18 years.
By the time they were teenagers, medical advances extended their life expectancies into their 50s. Now, with Trikafta, their life expectancy is the same as the general population.
Growing up, both sisters were told that they should avoid careers in health care or education to avoid being around contagious respiratory illnesses, but the new medication has meant Brennan can now pursue her dream of helping others through physiotherapy.
“A lot of people with cystic fibrosis, they kind of have that lingering age over their shoulder,” she said.
“My family has done really well, we don’t really talk about it, we just plan our future like anyone else will. Dream high because you’re going to achieve it.”
Brennan had requested a three-month supply of the medication that would cover her until she comes home for Christmas, when she would be able to arrange another three-month supply. However ,as she prepares to leave for the University of Limerick, Brennan has been told that she can only receive Trikafta in 28-day allotments.
Brennan’s family has been told that they can either purchase a three-month supply out of pocket, with an uncertain promise of reimbursement, or ship it. Each 28-day supply costs nearly $30,000.
Brennan’s mother, Katherine, says they’ve found a company to ship the medication to Ireland, but the solution is less than ideal. The company only insures packages for $1,000 and say it may take up to nine days for a package to reach Leah as it clears Irish customs.
The NB Drug Plan only allows the next month’s allotment of Trikafta to be picked up four days in advance.
“This should be a time where we’re all excited for Leah and for her future,” Katherine Brennan said.
“It’s been a very disheartening, frustrating, maddening experience.”
Cystic Fibrosis Canada has been calling on the New Brunswick government to change the extended supply policy. In neighbouring Nova Scotia, pharmacists are given the discretion to provide extended supply of the medication.
Kim Steele, the director of government and community relations for CF Canada, says that’s a good model for New Brunswick to follow.
“Why provide this life-changing, life-saving medicine to people if you’re only going to clip their wings just as they begin to soar,” said Steele.
There are over 4,400 Canadians living with cystic fibrosis, according to figures provided by CF Canada. Since Trikafta was approved in 2021, the number of hospital stays related to the disease has fallen by 39 per cent, the number of at home IV days by 56 per cent and the number of organ transplants by 67 per cent.
Steele says CF Canada is also calling on New Brunswick to eliminate deductibles for the medication, which are among the highest in the country at $1,862 for those making under $25,000 a year and $5,320 for those making $125,000 or under.
They also want to see coverage extended to more people with a rarer form of cystic fibrosis, which was just approved by Health Canada this year.
A spokesperson for the province said New Brunswick’s limit is due to the cost of Trikafta “due to the risk of theft, loss, or wastage.”
Katherine Brennan says that since the drug is relatively new, and its impact on those living with cystic fibrosis so great, they are likely one of the first families to run into this roadblock. But she’s hopeful that their fight will lead to change.
“There’s going to be many, many more people who discover their world has just grown,” she said.
“We hope that going through this process will lighten their load a little bit because we want people to be excited about this development.”