An Island man is part of a group pushing for a new drug to be approved in Canada to treat people with cystic fibrosis (CF).
Hunter Guindon, 24, joined CF Get Loud Canada in January to push for access to a life-changing medication. Trikafta, the new, patented medicine, has dramatically improved the quality of life for CF patients, but it is not approved for sale in Canada and is only available under a special access program.
“It’s a 100 per cent grassroots, patient-advocacy group of 2,000 CF patients that are all fighting for our life to get this drug,” said Guindon, who can’t wait for Trikafta to be available in Canada. “I think about it all day, every day. When is going to be the day that I can go to a pharmacy and take this drug?”
Cystic fibrosis is one of the most common fatal genetic diseases affecting Canadian children and young adults. There is no cure. Half of those who died in 2018 were younger than 33.
Guindon, one of the 4,300 Canadians living with the disease, was born and raised in Ontario. He was diagnosed at age 14 after years of fruitless visits to the doctor’s office, coughing until he vomited and repeated hospitalizations.
“You’re going in there thinking, ‘Oh, they’re going to give me a bottle of pills and in two weeks I’m going to feel fine.’ And you just never feel fine. You see your friends running around playing sports and you’re walking from the bus to school and you have to stop and catch your breath.”
Finally, Guindon was diagnosed correctly and stabilized on traditional CF medicines.
Guindon moved to P.E.I. in 2013 to attend the Culinary Institute of Canada and now works at The Table Culinary Studio in New London. His CF is managed by a doctor in Halifax.
“The treatments I do now are hours and hours in the morning and hours and hours at night whereas (Trikafta) is three pills a day and that’s it.”
A recently released study analyzed Trikafta’s impacts on the Canadian CF population.
Researchers projected that if Trikafta was approved for sale in Canada in 2021, the drug could extend the lives of CF patients by more than nine years and reduce the number of individuals with severe lung disease by 60 per cent by 2030.
CF Canada recently sent out a news release imploring the government to take action. CF Get Loud Canada and CF Canada are aiming their requests at the Patented Medicine Pricing Review Board (PMPRB) of Canada.
Dr. John Wallenburg, chief scientific officer at Cystic Fibrosis Canada, said CF Canada is not against lowering prices, but the PMPRB draft regulations are not in line with other Organisation for Economic Co-operation and Development (OECD) countries.
“The proposed changes go way too far, and so, what’s happened is, they’ve put a chill on the pharmaceutical industry. The number of drugs that have been submitted to Health Canada has fallen. The number of clinical trials being run in Canada has been chilled, and the company that’s the manufacturer of Trikafta has cited uncertainty caused by these new regulatory changes as the reason for not having submitted the drug to Health Canada yet,” said Wallenburg. “So, we’re calling on the government to halt those inhibitory changes.”
CF Canada would like to see government only bring in a smaller subset of changes that would bring the prices down by 20 per cent.
As part of his advocacy, Guindon is in touch weekly with his MP, Sean Casey.
Casey is sympathetic to CF patients who are asking for changes.
“For them, this is a matter of life and death,” said the Charlottetown MP.
He said the PMPRB is modernizing a dated set of rules that weren’t helping Canadians.
“There’s a lot of pressure being applied to government to do something that they can’t do until there’s an application in front of them and Vertex (Trikafta’s manufacturer) is saying, ‘We’re not going to submit an application until you change the rules of engagement such that the outcome will be favourable to us’.”
Alison Jenkins is a local journalism initiative reporter, a position funded by the federal government, working in Prince County. She can be reached at email@example.com.