Wed. May 25th, 2022

An insurance company has rejected Sara Aldrich’s bid for coverage for Trikafta, described by a lawyer as “the biggest stand-alone innovation in cystic fibrosis history.”

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Sara Aldrich believes that one cannot put a price on life.

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But others do just that, and the value they have assigned to her is less than the price of a newly approved drug, Trikafta, which could greatly improve and prolong it.

Aldrich, a 23-year-old student and resident of Stittsville, has cystic fibrosis, a progressive, degenerative multisystem disease that mainly affects the lungs and digestive system by creating an accumulation of thick mucus, causing respiratory disorders and digesting and absorbing nutrients difficult.

There is no known cure, and in 2018, half of the deaths in Canada from CF people under the age of 33 involved.

Aldrich was diagnosed as a 16-year-old and led an active lifestyle throughout his childhood and adolescence, playing competitive football. She fully recovered from a lung collapse when she was in 11th grade, but remembers well the warning a doctor at the hospital once gave and told her she should prepare for her death.

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Meanwhile, Aldrich’s lung function has dropped from between 80 and 90 percent three years ago to the low 40s today, despite a strict daily regimen aimed at slowing further decline. At this rate, she estimates she will be on the lung transplant list within two years.

“My dream is to run a marathon,” she says, “but right now, even when I go up the stairs, I usually cough so much that I vomit. I no longer sleep at night. I’m always exhausted. I “I see myself falling very, very fast and we do not know how to put an end to it. I have had infection after infection.”

Last June, however, CF patients in Canada were encouraged when Health Canada approved Trikafta, a drug that Kelly Grover, president and CEO of Cystic Fibrosis Canada, described as “the largest single innovation in cystic fibrosis history (with) the power to transform the lives of thousands of Canadians. “

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While not a cure, Cystic Fibrosis Canada’s Kim Steele says it’s by far the closest yet.

“We see people who were on the lung transplant list go off the list and return to work or be able to raise children. In the US, there has been a baby boom because people with CF are in a place where they think, ‘I is healthy enough to have a baby and I’ll be here a while to look after that baby. ‘

“Trikafta,” she adds, “has been transformative.”

With an annual list price of around $ 300,000, the drug would otherwise be out of reach of all but the richest, so many welcomed the news in September that Ontario was adding Trikafta to the provincial drug program.

“Our government has taken rapid action to ensure that all patients with cystic fibrosis have more timely access to the effective and life-changing treatments they need,” said Health Minister Christine Elliott.

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Because she still goes to school, Aldrich was able to apply for coverage through his mother’s Ontario Teachers Insurance Plan or OTIP, which is paid through Manulife. However, OTIP and many other groups that manage employee health plan benefits employ FACET, an independent team of clinical pharmacists who review and approve or reject requests for specialist drug treatments.

Two weeks ago, Aldrich received an email from FACET saying her application was rejected. The letter cited a recent recommendation from the Canadian Committee of Drug Experts (CDEC) from the Canadian Agency for Medicines and Technologies in Health (CADTH), indicating that Trikafta was not cost-effective.

“A price reduction of 90% would be required for Trikafta to reach acceptable cost-effectiveness thresholds,” the letter read. As a result, the group benefit plan is not able to provide coverage for Trikafta at present.

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Aldrich is, understandably, crushed.

“You can not put a price on someone’s life, and right now it’s a matter of life and death.

“Imagine being told that there is this amazing substance that will save you and then get it torn away from you.”

Steele, meanwhile, is upset and notes that the recommendation from CADTH is a non-binding one, intended for the country’s public payers, such as federal and provincial health plans, which take into account factors such as long-term hospitalizations and transplants.

“Our governments are paying for them and they have decided that this drug is worth funding because it has greater value than referring people to hospital beds for the rest of their lives and shortening their lives,” she says.

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“So when a private insurance company has not moved to cover this, it’s a real problem because what they’re basically saying is that the government can finance it, and they do not have to, and that’s shameful.”

“You can not put a price on someone’s life, and right now it’s a matter of life and death,” says Sara Aldrich. Photo by Errol McGihon /Postmedia

In addition, Steele notes, governments typically do not pay the full list price of a drug, but instead join forces to negotiate a better, private deal.

“Our governments were able to negotiate that price down, probably not 90 percent, but somewhere in the middle. And if our public payers can do it, so can the private insurance companies that charge premiums. It’s a total smokescreen, and people are paying for these private plans and not getting the benefits, not getting the drugs they need. ”

Steele admits there is no easy solution to what is a multilayer problem, but points to the model used in Quebec, where mandatory private insurance led to a cooperative risk-sharing model.

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She also suggests that private payers should be at the table with public ones when negotiating drug prices. “Everyone has a little bit to pay here, and if we all put our money in the same pot, we can get better results and people can get the medicine they need faster and in a more adequate way.”

Mike Sullivan, CEO of Cubic Health, which manages FACET, says that practices with provinces jointly negotiating private agreements with pharmaceutical companies, without insurance companies at the table, create a two-part pricing system for expensive drugs such as Trikafta.

“(It) creates a very unbalanced playing field,” he said in an email. “The benefit plans have limited funding to provide all benefits (not just medicines), and if they have to pay multiples of what the public plans have to pay, they cannot cover the same breadth of medicines.”

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Meanwhile, Aldrich weighs her options while her lung function worsens. She could apply for the province’s OHIP + plan, but would have to waive any other coverage under her mother’s benefit scheme, while any coverage she had to be approved for ends next year when she turns 25. It would at least fill a gap under which she hopes insurance companies will realize how important Trikafta is to CF patients.

There is also the possibility that she and her brother Chris, who also has CF, may be able to get Trikafta through the Ontario Disability Support Program.

“We’ve worked pretty hard for me to get Trikafta because it’s pretty much my last hope,” she says.

“Without Trikafta, I do not really plan my future because there is a fear that I do not have a future. But with Trikafta, I see myself achieving the goals I have always set for myself. I have always had a passion to teach and I have always wanted a family – that’s my absolute dream, I know that with Trikafta I would be able to start a family and have a house and everything you dream of as someone without CF. I see the potential in my life and live a long life. ”

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