Local mother cries tears of joy following provincial announcement

A woman from Ste. Agathe is applauding the Manitoba government for expanding coverage for the cystic fibrosis medication Trikafta to patients aged six and older. 

Health Canada approved Trikafta to treat children aged six to 11 in April. The Canadian Agency for Drugs and Technologies in Health issued a revised recommendation last month to include patients six years and older who meet the medical criteria. Trikafta was added to the provincial formulary for patients aged 12 and older in October 2021. The formulary is being updated to reflect expanded eligibility for younger children.

April Lussier of Ste. Agathe has a four year old son living with cystic fibrosis. She refers to Trikafta as a game changer.

"It helps by making changes on a cellular level, so, pretty much helping undo some of the effects of the genetic defect that people living with cystic fibrosis have," she explains. "Instead of having a lot of lung problems and build up of mucus, etc., that is no longer the case and we're seeing a lot of our community that have had access, have just phenomenal experiences with their lung function, with weight gain, overall health and energy is way up. So it's fabulous."

Trikafta is a triple combination drug that is used not just for treating symptoms but also targets the basic defect from specific genetic mutations that cause cystic fibrosis.

Lussier, who is part of the Manitoba chapter for Cystic Fibrosis Canada, says they have been advocating for this, for quite some time and notes it feels like their voices have finally been heard. She admits crying tears of joy on Wednesday after hearing the announcement.

"I may have happy cried a little bit (Wednesday) with this announcement," she says. "Because it's a lot of energy and time and effort from the community, family members and it's wonderful to see it come to fruition."

Lussier says prior to this week's announcement, coverage in Manitoba for this very expensive medication was for those aged 12 and older. That meant her family would have needed to wait eight more years to have access. 

"(It's) less than two years now," she notes. "And, importantly it's been put on Manitoba formulary which means that the government of Manitoba will cover the cost of this medication which in other instances could have made it out of the reach of a lot of the communities. So it's fantastic news."

According to the Canadian Cystic Fibrosis Registry, there were more than 4,300 people with cystic fibrosis in Canada in 2020 and about 130 of them live in Manitoba. Health Minister Audrey Gordon encourages parents and caregivers of children with cystic fibrosis who may benefit from Trikafta to speak with their health-care provider.