Okanagan resident rallies for life

Okanagan resident rallies for life

Vernon’s Melissa Verleg fighting for access to medication in her battle with cystic fibrosis

Melissa Verleg had the energy to fight for her life on the steps of the B.C. Legislature Wednesday.

Only thanks to the drug Orkambi, which minimizes the devastating effects of cystic fibrosis which the Vernon woman battles.

Without Orkambi, Verleg wouldn’t have been able to stand up in front of the crowd of 100 during the rally.

She would have been left gasping for air, unable to climb the steps, or share her story.

“I was born with cystic fibrosis, for which there is no cure,” said the 34-year-old mother of two boys who has an “amazing” husband. “Cystic fibrosis is a genetic disease which is going to kill me.”

She struggled for years, but in 2016 Orkambi halted the progression of the disease.

“It has given me back my life that cystic fibrosis was slowly successfully robbing me of one shallow breath at a time,” Verleg, whose medication runs out in January as insurance coverage has been cut.

“In just a few short weeks my supply of Orkambi will run out and I have no way of affording anymore.”

Which is why Verleg, joined by close to a dozen others with similar stories, including children, rallied Wednesday for the government to approve Orkambi under B.C. medical.

The province of British Columbia has the ability to grant me the breath to live,” she said.

Without it, she fears her life will not only become more difficult, but will be cut short.

“My children are going to have to go back to watching their mother struggle to breath, walk and read books to them. My children do not deserve this.

“I’ll lose precious days living life. I’ll go back to living a life barely worth living.”

So far, Verlegs efforts to lobby the government have not succeeded, but with added pressure she remains hopeful that Health Minister Adrian Dix will hear her plea, and the pleas of others suffering.

“I’m here fighting for Orkambi. The government of British Columbia has let me down, it has let my sons down.”

Yet – there has been no response from Dix.

Also speaking at the rally was 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.

“Cystic fibrosis is the most common fatal genetic disease in Canada. At present there is no cure.”

Yet Orkambi is one drug that provides hope to people like Verleg. Hope which the government is crushing.

“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.”

 

Okanagan resident rallies for life

Okanagan resident rallies for life

Just Posted

.
Princeton’s Spotlight wins two provincial awards for excellence

Publisher takes first place for investigative reporting

Princeton GSAR responds 24 hours a day, 365 days a year. In 2020 the crew was called out 34 times, and members spent 721 hours on calls, and 683 hours training. Photo Princeton GSAR Facebook
Teen missing in Manning Park found after 24 hours

Young man spends night on mountain and survives with just a few scrapes

The COVID-19 cases reported over the week of May 30 to June 5. (BC CDC)
South Okanagan sees second straight week of 17 new COVID-19 cases

Summerland, Keremeos and Princeton all recorded no new cases

The Regional District of Okanagan-Similkameen has hired a new FireSmart coordinator. (Black Press file photo)
FireSmart coordinator named for Regional District of Okanagan-Similkameen

Kerry Riess will provide assistance to mitigate potential wildfire hazards

The damages to the downtown park in Keremeos. One of the trees that was uprooted was a memorial tree with a plaque. (Submitted)
Memorial tree in Keremeos park uprooted by vandals

All of the trees in the small park were torn up and the statue was shifted

Dr. Albert de Villiers, chief medical health officer for the Interior Health Authority. (Contributed)
Black Press Media Weekly Roundup: Top headlines this week

Here’s a summary of this week’s biggest stories from the Okanagan-Shuswap

57-year-old Kathleen Richardson was discovered deceased in her home Wednesday, June 9, 2021. Her death is considered a homicide and connected to the slain brothers found on a Naramata forest road. (Submitted)
Naramata community in shock as condolences pour in for homicide victim Kathy Richardson

Richardson was well liked in the community, a volunteer firefighter with a home-based salon

British Columbia-Yukon Community News Association’s 2021 Ma Murray Awards were handed out during a virtual ceremony on Friday, June 10. (Screen grab)
Black Press Media winners take gold at B.C. and Yukon journalism awards

Publications received nods in dozens of categories

The RCMP are asking for assistance regarding the death of Kathleen Richardson of Naramata, pictured here. Her death is believed to be related to two homicides in Naramata in May. (RCMP)
Police identify South Okanagan homicide victim as 57-year-old Naramata woman

57-year-old Kathleen Richardson was discovered deceased in her home Wednesday

Fair-goers take a ride at the 120th annual Armstrong Interior Provincial Exhibition and Stampede Aug. 28-Sept. 1, 2019. (Katherine Peters - Morning Star)
Armstrong’s IPE not eligible for COVID-19 grant designed for major attractions

Shuswap MLA Greg Kyllo criticized the rigidity of the provincial program’s criteria

Two e-scooters parked on the sidewalk along Water Street in downtown Kelowna on Monday, May 3. Scooters parked on walkways are causing accessibility issues for some people with disabilities. (Michael Rodriguez/Capital News)
Kelowna General Hospital clinicians observe increase in e-scooter injuries

A report is set to go to city council next week on how the e-scooter pilot has gone thus far

Prime Minister Justin Trudeau greets campers while visiting McDougall, Ont. on Thursday, July 19, 2018. THE CANADIAN PRESS/Frank Gunn
71% of B.C. men say they’d prefer to go camping with Trudeau: survey

Most British Columbians with plans to go camping outdoors say they’d prefer to go with Trudeau or Shania Twain

Members of the Department of Fisheries and Oceans’ Marine Mammal Response Program rescued an adult humpback what that was entangled in commercial fishing gear in the waters off of Entrance Island on Thursday, June 10. (Photo courtesy Marine Mammal Response Program)
Rescuers free humpback ‘anchored’ down by prawn traps off Vancouver Island

Department of Fisheries and Oceans responders spend hours untangling whale

Chilliwack cocaine trafficker Clayton Eheler seen with a tiger somewhere in Asia in 2014. Eheler was sentenced to nine years jail in 2018, but was released on bail in October 2020 pending his appeal of conviction.(Facebook)
Director of civil forfeiture seeks $140,000 from Fraser Valley drug dealer’s father-in-law

Clayton Eheler’s father-in-law Ray Morrissey caught with money in Fort St. John by B.C.’s gang unit

Most Read