'Literally life-changing': Island family celebrating after B.C. announces funding for cystic fibrosis drug for kids
It appears impassioned calls on the B.C. government to fund a cystic fibrosis drug for young children has been heard by policy makers.
On Wednesday, the province announced it would be expanding its eligibility criteria for the drug Trikafta to include young children aged six to 11 starting on Sept. 13.
B.C. is the last province to approve the drug's use in kids of this age group, a delay that was painfully apparent to the family of 10-year-old Maysa Milligan, who has cystic fibrosis and lives in Courtenay, B.C.
Maysa's mother, Sarah Milligan, has been calling on the province to approve the drug for young children, since every other province in Canada began funding it earlier this year.
Trikafta was approved for adults in 2021 by Health Canada, and was later approved for young children this spring.
On Wednesday evening, Milligan said she was thrilled by the announcement.
"This is literally life-changing for our entire family. Like, this is going to impact Maysa’s health so much, it has the potential to impact Maysa’s health so much," she said.
The family lives in Courtenay, but frequently travels to Victoria General Hospital for treatments.
"It may mean that her health improves to the point we can consider doing less of the therapies that we have to do," said Milligan.
With eligibility criteria for Trikafta expanding next week, the family expects Maysa will be able to start taking the drug near the end of September.
"I can't wait for the 13th to come," said Maysa. "I know that will be a game-changer for my life."
"I can't wait to finally have that [Trikafta] in my hands, but I do wish it could have come a little bit sooner," said the 10-year-old.
Ten-year-old Maysa Milligan is pictured.
'DRAGGING ITS FEET'
On Aug. 30, Milligan told CTV News that the province was "dragging its feet" on approving a treatment that could change the life of her child.
"Every day that goes by she loses a little," she said at the time.
"She gains scar tissue in her lungs that we can't ever undo. So the longer it takes to get access to these medications the sicker she gets," said Milligan.
One day after CTV News shared the family's story, Cystic Fibrosis Canada said it had received word from the provincial government that it would be approving the use of Trikafta in young chilren in mid-September.
Milligan was thrilled by the announcement, but was still puzzled why the province was going to wait weeks to get the drug into families' hands.
"It doesn't make sense to allow them to get worse before they get better. We know they're going to approve it, so the delay is unacceptable," she said on Aug. 31.
'WORKED TIRELESSLY FOR THIS DAY'
The B.C. government says about 150 people currently use Trikafta PharmaCare coverage. Once the eligibility criteria expands next week, that total could double with approximately 185 more people eligible to receive funding for the drug.
The Milligan family had previously told CTV News that without funding, it would cost about $300,000 a year to purchase the medication.
Trikafta is funded through the B.C. Expensive Drugs for Rare Diseases process, which provides funding for medications for rare conditions on a case-by-case basis.
Cystic fibrosis is a progressive disease that affects about 500 people in B.C., according to the province. The disease primarily affects the lungs but can harm other organs as well.
"Today’s news will change the trajectory of the disease and the future for many children and adults in British Columbia who live with cystic fibrosis," said Kelly Grover, president and CEO of Cystic Fibrosis Canada in a statement Wednesday.
"We celebrate this news alongside our cystic fibrosis community in British Columbia, who has worked tirelessly for this day that has finally come," she said.
With files from CTV News Vancouver Island's Robert Buffam
CTVNews.ca Top Stories
Lanny McDonald and a few old Flames take the Stanley Cup on a surprise visit to the man who saved his life
The Stanley Cup was passing through town Friday, and Lanny Legend took it upon himself to take it for a surprise visit.
Bathroom break nearly derails $22 million project at city council meeting
A brief break during Wednesday's city council meeting in Saskatoon nearly cost the city dearly.
Chad Daybell sentenced to death for killing wife and girlfriend’s two children in jury decision
Jurors resumed deliberations Saturday on whether a man should be sentenced to death after being convicted days earlier of the murders of his wife and his girlfriend’s two youngest children in Idaho.
Robert Pickton stabbed with toothbrush and broken broom handle: victim's family
The family of one of Robert Pickton's victims says the convicted serial killer suffered an incredibly violent death at the hands of another inmate.
Father who killed one-year-old son with axe may be allowed to travel in southwestern Ontario
A Mennonite father who killed his one-year-old son with an axe may be allowed to travel to parts of southern Ontario in the coming months
'It feels like freedom': Why some Albertans like going nude in nature
Few people can say they accidentally purchased a nude beach — but Shelley can. When she saw a piece of land she could fondly remember camping on was up for sale, she inquired about it and ended up purchasing it. She soon found that there were already inhabitants on it.
This Calgary home has a giant tree in the middle, and it's for sale
There's a luxury 'tree home' for sale in Calgary.
China lands spacecraft on the moon amid growing space rivalry with U.S.
A Chinese spacecraft landed on the far side of the moon Sunday to collect soil and rock samples that could provide insights into differences between the less-explored region and the better-known near side.
Pedestrian dies after being hit by train in Brockville, Ont.
Brockville Police says a pedestrian has died following a collision with a train that was heading to Toronto.