Beth Vanstone has been fighting for years to get life-saving Cystic Fibrosis (CF) medications into the hands of Canadians. It's a battle not only faced by the CF community, she says, but the entire country as the federal government struggles to obtain a steady flow of supply of the COVID-19 vaccine.
As CF Warrior Madi Vanstone's mom and an advocate for the CF Get Loud group, Vanstone says Canada's slow response to the vaccine rollout is not shocking considering the reputation Canada already has with Big Pharma, making it difficult for pharmaceutical companies to get their products into the country at a fair price.
"Canada has done nothing but make an adversary out of Big Pharma," says Beth. "They have done nothing to cultivate a relationship, they don't invest in R&D and don't encourage pharmaceutical companies to work here, develop here."
"The entire Canadian population is experiencing what rare disease patients have been experiencing for years," she says.
Prior to the pandemic, the Federal government had been working toward lowering drug prices with the Patented Medicine Prices Review Board (PMPRB) or universal pharmacare.
The PMPRB was created in 1987 as a way to prevent price gouging by pharmaceutical companies by comparing prices in Canada to other countries. Canada has always been comparing their prices against wealthy countries like the U.S. and Switzerland, but recently switched to lower-cost countries like Australia in order to be able to afford the universal pharmacare system.
The PMPRB added new stricter rules for pharmaceutical companies to have their drugs accepted into Canada. The changes were set to take effect this January but have been pushed to July 1, 2021.
Because the Federal government is now at the mercy of Big Pharma when it comes to COVID vaccines, people like Beth believe the steps taken prior to the pandemic, targeting Big Pharma, have soured the relationship between drug-makers and Canada.
She hopes this pandemic will be a lesson for Canada and its relationship with pharmaceutical companies.
"They (Canada) want to have the least prices and the most complicated system in the world to get these drugs in and approved. Now the consequences are coming back to bite them," Beth says..
Vanstone has experience in working with both government and drug companies, on rare-disease drug approvals.
Seven years ago, her daughter Madi made headlines when she approached then-premier Kathleen Wynne and persuaded the Ontario government to approve coverage for her life-saving drug, Kalydeco.
Kalydeco is a drug that "fixes" a genetic deficiency in some CF patients; Madi was among the three to four percent of sufferers who could benefit from the drug. But without the coverage by OHIP, her family would have struggled with the $350,000 a year cost of Kalydeco; even with private insurance, and participation in a drug study, the Vanstones were looking at a cost of about $60,000 per year.
Beth and Madi are now advocates for the CF Community, and continue to fight for more lifesaving medications that have yet to be approved in Canada for CF patients, and others living with rare diseases.
There are approximately 4,300 CF patients in Canada. In December, CF Canada sent a letter to the provincial Health Ministers urging the provinces to include Canadians living with CF and their caregivers as a priority group, as they the rollout of COVID vaccines.
In January 2021, CF Canada received confirmation from the Ontario government that those living with CF in Ontario will be prioritized in the second phase of the rollout, set to begin in March.
But Beth worries about the vaccine supply, due to recent setbacks with shipments of the Pfizer-BioNTech and Moderna vaccines to Canada. According to the Canadian government website, as of Feb. 4, only 872,064 Canadians have received at least one dose of an approved COVID-19 vaccine, while 135,647 Canadians have received both required doses.
Canada is the only G7 country that is accepting vaccines from COVAX, led by the Wold Health Organization - a program designed to assist lower-income nations in purchasing the vaccines. Without domestic vaccine production, Canada is also at the mercy of other countries in obtaining all vaccines.
"This is Canada. We're not a third world country," says Beth, "and this has happened because of government and the way they have formulated this horrible relationship with Pharma."
"We deserve better than this," she adds.. "It is frustrating to see other countries getting ahead of the curve."
She is hoping that the pandemic will be a lesson for Canada, to work on the country's relationship with pharmaceutical companies, worldwide.
"Big Pharma can't be so greedy, but the government also has to work with them and make the process a little smoother and make access wider," Beth insists.
There has been a recent step forward. Earlier this week, Prime Minister Justin Trudeau announced that Canada will be building its own production facility in Montreal, to produce American vaccine maker Novavax products under licence, starting this fall.
But for now, Canada has no choice but to rely on other countries for a vaccine supply.
According to the Canadian government website, Health Canada is working with international regulators to collaborate on the review process to get vaccines to market as quickly as possible, but will always make independent, science-based decisions that are in the best interest of the public.
The reality is, delays are part of the system. Just one example: The CF drug Trikafta, recently submitted to Canada and accepted for priority review.
Trikafta has already received regulatory approval in 32 countries. According to the CF Canada website, Canadian research released in August 2020 shows that if Trikafta was brought to Canada quickly, as it was in the United States, the United Kingdom and parts of Europe, it could result in extraordinary health benefits by 2030 - including 15 percent fewer deaths, 60 percent fewer people living with severe lung disease, and an increased estimated median age of survival for a child born with cystic fibrosis of 9.2 years.
"The drug has been approved all over the world, but here's Canada still grinding through with no sense of urgency, losing patients as young as 12-years-old," fumes Beth.
The four-person team behind CF Get Loud community, including Beth, are now working long hours, trying to get the government on board with speeding up approvals for life-saving medications.
CF Canada and CF Get Loud have reached out to top supporting MPPs in Ontario, trying to work together at a round table caucus on ways to encourage the pCPA to act and negotiate in a timely manner.
"We know the years that it takes to get the drugs to these people," Beth says. "It's really pathetic that we have to work this hard to save the lives of patients.
"The government needs to sit down and renegotiate its relationship with Big Pharma and see what they can do to work together. Ultimately Big Pharma is going to save people, and Canada needs to support that."
