At 25 years old, cystic fibrosis patient Katrina Secord says her fate is in the hands of the Alberta govenment, as she awaits funding for a medication to help manage her illness and potentially save her life.
Secord was diagnosed with cystic fibrosis as a baby, when the average life expectancy for someone with CF was 18 years.
“It’s something you’re born with. It’s not due to lifestyle or anything,” Secord explained. “It’s at a cellular level that’s causing the mucus to be thicker and not passable. There’s mucus everywhere in your body,” she said.
“It’s thicker and it’s stickier so it’s a breeding ground for infection.”
As a child, Secord said she was in relatively good health, but as a teenager things started to go downhill.
“I got sick when I was about 16 with a really bad pneumonia. Every exacerbation you have that leads to IVs or hospital stays increases scar tissue in your lungs.”
During her university years, Secord was constantly in and out of the hospital.
“Then Orkambi came, and it was revolutionary. My whole life was changed. I was healthy, I was doing normal things.”
While on the drug, she was working as a massage therapist, exercising and planning to have a family.
“I was able to do everything without being tired at the end of the day,”the Edmonton woman said. “I gained a lot of weight too, that was really nice. It’s something that I’ve always struggled with.”
Her Orkambi prescription cost $250,000 each year. For one year, her husband’s work benefits plan covered the cost.
But in November, he had to change jobs. It meant Secord lost access to her life-changing medication.
“Since then I’ve lost 30 pounds, all the lung function, all my energy and I’m taking a leave of absence at work now.”
The province isn’t funding the drug, and her Blue Cross plan doesn’t cover it either.
In a statement, Alberta Health wrote:
“Alberta follows national processes to ensure new treatments provide patients with better health outcomes. After Health Canada approves a new treatment, Alberta and other jurisdictions rely on the Canadian Drug Expert Committee (CDEC) recommendation. Based on the recommendation, the pan-Canadian Pharmaceutical Alliance may negotiate a price. These steps occur before individual jurisdictions consider covering a drug.
In the case of Orkambi, the CDEC found there was not enough evidence of clinical effectiveness. They recommended public drug plans not provide reimbursement for this drug. If the drug company has additional, or new clinical evidence, they can resubmit it to the CDEC.
No Canadian provinces and territories provide coverage for Orkambi under government-sponsored programs. Other countries – such as England, Scotland and Australia – do not provide public coverage of this drug.”
But other countries do cover Orkambi, including the United States, Ireland, Germany and France.
READ MORE: Why Canadian cystic fibrosis patients live 10 years longer than their U.S. peers
Alberta Health’s statement doesn’t sit well with Chris MacLeod, a Toronto lawyer who has cystic fibrosis and is also the chair of the Canadian Cystic Fibrosis Treatment Society.
“That’s offensive and it’s shameful,” he said. “First of all, this was approved by Health Canada for having significant health benefits for CF patients, Orkambi was.”
He said it’s also been supported by Canadian doctors.
“42 CF clinics in Canada came together, wrote to the Common Drug Review and said ‘Hey, we need you to fund this, as doctors who treat patients.'”
READ MORE: New calls for B.C. to cover cost of ‘life-changing’ cystic fibrosis drug
The doctors also said they would give the Canadian Drug Expert Committee (CDEC) the criteria to outline when they would put someone on Orkambi, and when they would take them off if it wasn’t working.
That letter didn’t have the intended impact.
“They acknowledged receipt of that letter from the CF doctors and chose to ignore it, which is really astounding when they have no CF experts on the Common Drug Review,” MacLeod said.
He believes the real reason Orkambi isn’t being funded is because of the cost.
READ MORE: Orphan drugs and the high cost of rare diseases
In an email to Secord, Alberta Minister of Health Sarah Hoffman confirms that is part of the reasoning.
“The CDEC reviewed Orkambi for patients aged 12 and over in 2016, and recommended against listing the drug on government-sponsored programs because of uncertainty regarding its impact on long-term improvements in lung function and survival, and its high cost.”
“It seems like an outrageous price to me, at the same time, how do you put a price on life?” Secord said.
Vertex Pharmaceuticals, Orkambi’s manufacturer, recently tried to lure Canadian provinces to the negotiating table by offering a reduced price for the medication.
“The distressing patient stories we hear every day are the driving force behind our decision to make this offer, which will deliver significant value to Canadian public payers,” Vertex said in a statement on Wednesday.
Orkambi was approved by Health Canada in January 2016, but in October of that same year, the Canadian Agency for Drugs and Technologies in Health recommended the cost of Orkambi should not be reimbursed.
Since then, provinces have elected not to negotiate with Vertex regarding Orkambi.
“Realistically, the approach taken by government means patients will have to wait until 2019 to possibly gain access to Orkambi, at the earliest. Furthermore, the government’s process does not address the CF Community’s request for the government and Vertex to come to a rapid agreement on Orkambi public access,” Vertex wrote.
The company said Canada is the only developed country that is not currently providing access to Orkambi or in negotiations with Vertex to reach an agreement.
Secord believes restarting the approval process will take time she doesn’t have.
“That would take years, we’ve already waited years. There’s going to be a lot of people dying in that time frame.”
She recently hoped to have children, now she’s just hoping to put off a double lung transplant as long as she can.
“I’ve watched all my friends go through it, and unfortunately I’ve watched all my friends die. We all go the same way, so we all know how it happens,” she said.
“I can’t see me having a career or children or living as long as my husband. I’ll probably die before my mom does, for sure. And plan my own funeral at 25.”