Melissa Verleg is battling cystic fibrosis, but has recently learned that the only medication that helps her tackle simple daily tasks, isn’t covered through insurance. (Photo submitted)

B.C. residents rally for medication

Cystic fibrosis patients from Vernon, Vancouver, Victoria among those rallying at Legislature Wednesday

Unable to afford life-saving medication in their battle against a debilitating disease is driving a call for action.

Members and supporters of the Cystic Fibrosis community from across the province will be making their voices heard by sharing their stories in front of the B.C. Legislature on Wednesday from 11:45 – 12:45.

“The Cystic Fibrosis community in British Columbia has had enough: it’s time for the provincial government to pay more attention to the needs of people living with CF by helping them access life-changing drugs, specifically Orkambi, and increasing funding for CF clinics,” said Phil Norris with Cystic Fibrosis Canada.

CFC hopes that the government will use their power to help change a broken system that has left people living with CF in this province in a dire situation.

Among those who will speaking at the rally is Vernon’s own Melissa Verleg. The wife and mother of two has just lost her private insurance coverage of the drug Orkambi and has been fighting for the government, and Health Minister Adrian Dix to include it under B.C. medical.

“I find it unacceptable that he has told me he can not fund Orkambi because of the negative recommendation or even do a special authorization when he has done exactly that with Soliris for a lady down in Burnaby,” said Verleg, whose medication costs $250,000/year. “Soliris also has a negative recommendation and costs $750,000 per year. He approved her to get the drug (last week). Here we are not being heard and I am going to run out of meds beginning of January. I don’t understand why he doesn’t see value in my life.”

Dix is invited to attend the rally so he can hear first-hand what it means for his residents to be able access the drugs they need to survive.

Joining Verleg to speak are Coquitlam father of two Todd Homenuk who has CF and has been on Orkambi for three years.

Lilia Zaharieva, a UVic student who is battling CF and also lost her private insurance of Orkambi, will also speak. She is joined by her friend Jim Anglin, a UVic professor.

Jessica Steeves from Victoria will be there to speak on her six-year-old daughter’s behalf. Her daughter has CF and meets the criteria for being prescribed Orkambi but has no access.

Dave and Heather Strange, parents of a 13 year old son who has CF and meets the criteria for being prescribed Orkambi, will emcee the event.

Adam Taft and wife Rhyanon will also speak about their 10 year old son who has CF and meets the criteria for Orkambi.

Debbie Simpson has a 17-year-old son with CF who is on Orkambi, and she will also speak.

There will also be Vancouver’s Leona Pinsky, CFC vice chair, who has been involved with CF Canada since her youngest child, Rina was diagnosed with CF at birth.

Lynne Rozenboom, CFC fund development manager, also has an adult son with CF.

Also on hand will be Green MLA Sonia Furstenau and Dr. Ian Waters, recently retired as Director of the Adult CF Clinic in Victoria and continues to be on several Ministry of Health CF steering committees.

Vertex Pharmaceuticals had made an offer to the province, which refused to negotiate.

“We firmly believe the approach taken by the provincial governments will be unacceptable to the Cystic Fibrosis Community as they have been waiting since January, 2016,” Vertex states in a release, adding that CF patients lose approximately one to three per cent of lung function per year.

“The degree of CF severity differs from person to person; however, the persistence and ongoing infection in the lungs, with destruction of lungs and loss of lung function, will eventually lead to death in the majority of people with CF. Given these statistics you can understand why we are acutely aware of the anxiety caused by this lengthy process for patients with CF and the urgent need for resolution,” Vertex continues.

“We are hopeful the Provinces will share our sense of urgency and work with Vertex to find a solution that means providing access for patients today.”

Just Posted

RCMP hunt for suspect in West Kelowna bank robbery

Suspect used a note and fled bank Saturday with an undisclosed amount of cash

Community Leader Awards: Shelley Pacholok

The Kelowna Capital News honours those who give back in the community

International Arts Festival returns to Kelowna

Living Things is a month-long festival with live performances by artists from around the world

Legion bell prank hits sour note

Anger erupts after Summerland Legion member removes bell from Peachland Legion

Kelowna Art Gallery members’ exhibition offers variety of media

Encounters will be held from Dec. 2 to Feb. 3

Vehicle with dog inside stolen from Oliver gas station

A black Honda CRV was stolen from the Oliver Chevron early Sunday morning

Team Canada loses 5-2 over the Czech Republic at World Junior A Challenge

Vees’ Tychonick drops in one of Team Canada West’s pair of goals

Site C decision coming Monday

Premier John Horgan to announce fate of dam project at B.C. legislature

PIGS bring Pink Floyd sound to Kelowna

Victoria band pays tribute to iconic British band on Feb. 10 at Mary Irwin Theatre

Letter: Another flagger dies; when will you slow down?

You have all seen our signs, trucks and my favorite our cones. Why don’t you slow down?

Kelowna-developed technology to be unveiled at Summerhill

Kelowna winery and tech company introduces new technology for phone or tablet

California couple name daughter after Revelstoke

Revy Elle Atashroo was born on Nov. 27. Her name honours the town her parents loved exploring.

Most Read