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.”