The Canadian Cystic Fibrosis Treatment Society (CCFTS) is pushing the Saskatchewan government and MLAs to make medicines available and affordable to cystic fibrosis patients.
The CCFTS released a research paper on Tuesday detailing the growing number of cystic fibrosis in the province and how expensive drug treatments can become for those who don’t have adequate coverage to make medicines more affordable such as private insurance plans.
Chris MacLeod, founder and chair of the society, grew up in Saskatchewan but now works at his law firm in Ontario. MacLeod was diagnosed with cystic fibrosis at two years old.
When sharing his story, he said he was able to manage both his legal career and the disease until the summer of 2012 when he was hospitalized for five months because of a CF flare up. He was looking at the possibility of a lung transplant until he accessed a drug named Kalydeco through his private medical plan – a medicine that treats a root, underlying cause of the disease rather than only its symptoms.
Since using the medication, MacLeod said it has been an “absolute game changer” because he has not needed an oxygen tank and his lung capacity has doubled.
There are other drugs that provide the same treatment as Kalydeco such as Orkambi, Symdek and Trikafta. The issue CF families face is that they have limited access to these drugs or they are unavailable through provincial public drug plans, pushing them out of people’s budgets.
MacLeod said he was lucky enough that his private plan was able to cover Kalydeco for him. Now he wants to make this a reality for others by making it an election issue when voters head to the polls this fall.
“Our research paper is an initial effort to raise awareness of CF in Saskatchewan and the need for our elected representatives to show leadership by making new medicines accessible for all CF patients and their families,” stated MacLeod during a news conference on Tuesday at Hotel Saskatchewan.
“These new breakthroughs in CF drugs, once they have been approved by Health Canada, may be accessed by individuals and families who don’t have private insurance plans.”
MacLeod mentioned the retail sticker price for someone wanting to buy a CF treatment drug on the open market is about $200,000 per year. However a negotiated price between a government and manufacturer can bring the price down significantly, which is why he wants voters to raise the issue with their government representatives.
“With a general election on the horizon in October of 2020, we’re asking all provincial politicians, those in office and those hoping to win a seat in the Saskatchewan Legislature, to show leadership,” added MacLeod. “We’re asking Premier Scott Moe to show leadership at the national level.”
MacLeod noted that Premier Moe has a connection with the chair of the pan-Canadian Pharmaceutical Alliance (PCPA), who are currently in negotiations to find a deal for these drugs. However MacLeod is concerned there is no deadline attached to these discussions, so he hopes the premier will take advantage of that link by convincing the chair to set a deadline of Labour Day weekend to ensure a deal is in place to make these drugs affordable for Saskatchewan CF residents.
The research paper also found the Saskatchewan government is spending much less on its public drug program than other Canadian provinces. The report also notes the median age of Canadians living with CF is 23 and a half years, while the median age of death is approximately 30.