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

Ucluelet talks pot shops

Two applications are being considered as cannabis retailers.

Ahousaht students kick off school year with inspirational field-trip

Maaqtusiis kicks off year with two-night stay at Cedar Coast Field Station on Vargas Island

Surf’s Up event in Tofino offers a wave of positivity for families living with autism

“There’s no other opportunity like this for kids like Rylan.”

2019 FEDERAL ELECTION: Meet the candidates for the Courtenay-Alberni riding

In an effort to inform the Courtenay-Alberni riding constituents, we have supplied… Continue reading

Crew keeps worried mother at bay while rescuing entangled baby humpback near Ucluelet

“These animals are massive, they’re powerful and it really is dangerous.”

Shambala named best music festival in North America

Shambala Music Festival is held at the Salmo River Ranch in B.C.

B.C. MLA calls on province to restrict vaping as first related illness appears in Canada

Todd Stone, Liberal MLA for Kamloops-South Thompson, introduced an anti-vaping bill in April

Chilliwack woman wins right to medically assisted death after three-year court battle

Julia Lamb has been the lead plaintiff in a legal battle to ease restrictions on Canada’s assisted dying laws

B.C. bus crash survivor petitions feds to fix road where classmates died

UVic student’s petition well over halfway to 5k signature goal

NDP, Liberals promise more spending, while Tories promise spending cuts

Making life more affordable for Canadians a focus in the 2019 election

UPDATE: Police probe third threat against a Kamloops high school in eight days

Police have not released any further details into what the threat includes

Charges dropped against Mountie involved in shooting death of Surrey man

‘I feel like I’ve lost Hudson all over again,’ says mom

B.C. Interior caribou protection area big enough, minister says

Proposals sparked protest in Kootenays, Williams Lake region

Two B.C. women selected to compete on ABC’s The Bachelor

Mykenna Dorn and Alexis Thind will compete for bachelor Peter Weber’s heart

Most Read