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.”

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

The B.C. Centre for Disease control is telling people to keep an eye out for the poisonous death cap mushroom, which thrives in fall weather conditions. (Paul Kroeger/BCCDC)
Death cap mushroom discovered in Comox

Highly poisonous mushroom found fruiting near Filberg Park

The Salvation Army Christmas Kettle Campaign will launch on Nov. 13 this year. Black Press file photo
Salvation Army Kettle Campaign ringing this year with an electronic twist

The new tiptap machine used by the Salvation Army will be set at $5 denominations

Jimmy Carter, left, is pictured with country music legend Willie Nelson — one of many musicians featured in a documentary about the former U.S. president. The film, Jimmy Carter: Rock and Roll President, is the latest feature in World Community’s film series. Photo supplied
Comox Valley non-profit presents ‘Jimmy Carter: Rock and Roll President’

World Community’s film series continues Nov. 6-8 with a new uplifting film,… Continue reading

The Calgary Zoo is aiding in recovery efforts for the Vancouver Island marmot, an endangered species. Pictured here, a marmot at Mount Washington. (Black Press file)
Despite challenges, 2020 good year for Vancouver Island marmot population

In 2019, the foundation counted 60 pups; this year, it reached 46

Several local schools took part in Student Vote for the B.C. election. Black Press file photo
Students in Student Vote support NDP in Comox-Courtenay

Unlike actual vote, students in Mid Island-Pacific Rim back Greens

Provincial health officer Dr. Bonnie Henry updates the COVID-19 situation, B.C. legislature, Oct. 26, 2020. (B.C. government)
B.C.’s COVID-19 case count jumps by 287, another senior home outbreak

Two more deaths recorded, community outbreak in Okanagan

Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

MMFN First Nation has said that it will restrict access to portion of Highway 28 that passes through the Nation’s land until a road use agreement is reached. (Black Press file photo)
Vancouver Island First Nation blocks highway access to logging trucks in Gold River

Mowachaht/Muchalaht First Nation restricting access for Western Forest Products pending road deal

An untitled Emily Carr painting of Finlayson Point was donated to the Art Gallery of Greater Victoria by brothers Ian and Andrew Burchett. The painting had been in their family for several decades. (Courtesy of the Art Gallery of Greater Victoria)
Never before seen painting by famed B.C. artist Emily Carr gifted to Victoria gallery

Painting among several donated to Art Gallery of Greater Victoria

100 Mile Conservation officer Joel Kline gingerly holds an injured but very much alive bald eagle after extracting him from a motorist’s minivan. (Photo submitted)
Rescued bald eagle that came to life in B.C. man’s car had lead poisoning

Bird is on medication and recovering in rehab centre

Janet Austin, lieutenant governor of B.C., was presented with the first poppy of the Royal Canadian Legion’s 2020 Poppy Campaign on Wednesday. (Kendra Crighton/News Staff)
PHOTOS: B.C. Lieutenant Governor receives first poppy to kick off 2020 campaign

Janet Austin ‘honour and a privileged’ to receive the poppy

From left: Rick Weaver, Anita Eldershaw-Pitman and Area A director Daniel Arbour at the Friendly Port Child Care Centre. Photo supplied
District funds enable expansion at Union Bay child care facility

A grant from the Comox Valley Regional District will help create eight… Continue reading

Cowichan Search and Rescue set up near the Silver Bridge in Duncan on Wednesday morning, Oct. 28, 2020 to rescue a dog from the Cowichan River. (Citizen file)
Cowichan Search and Rescue save dog from icy Cowichan River

Search and Rescue’s swiftwater team was called in

Most Read