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MPP calls on Feds to speed up Cystic Fibrosis drug

November 19, 2020   ·   0 Comments

(Above: New Tecumseth brothers Andre and Joshua Larocque live with Cystic Fibrosis. Contributed photo)

Negotiations for gene modulating drugs that treat cystic fibrosis have dragged on longer than anticipated between the Federal government and Vertex Pharmaceuticals.

Simcoe–Grey MPP Jim Wilson recently sent a letter to Prime Minister Justin Trudeau expressing his frustration around the negotiations and requested that they be expedited since they started in June and have dragged on well beyond the 90 days in which they were expected to conclude.

“I’m extremely disappointed on behalf of cystic fibrosis patients and their families,” he said.

“As a former Minister of Health, I’m all in favour doing good negotiations, trying to get the best price, but not at the expense of suffering patients.”

The gene modulating drugs being negotiated, Orkambi and Kalydeco, effectively eliminate symptoms for cystic fibrosis patients, boosting their resiliency to sickness, lung function and quality of life.

The pan-Canadian Pharmaceutical Alliance (pCPA) negotiates drug prices when new medications come into Canada and is the governing body currently in discussions with Vertex about Orkambi and Kalydeco.

Wilson noted the pCPA is working very slowly in approving cystic fibrosis drugs, making him question if the negotiations are being slowed down to save money.

“When you consider 20 other countries in western democracies like ourselves have approved these drugs… you get very suspicious as to why these politicians, premiers, and health ministers are hiding behind the [pCPA] organization that’s not giving approval,” he charged.

Beeton mother of a cystic fibrosis patient, Beth Vanstone, said she appreciates Wilson’s efforts to expedite the negotiations with Vertex.

Every day that goes by where Canadians can’t access gene modulating drugs could be the difference between life and death, she noted.

A 12-year-old boy died three weeks ago from cystic fibrosis while waiting for Trikafta, a gene modulating drug that is proven to be effective in up to 90 per cent of patients,

“We seem to find money for everything, I don’t know why cystic fibrosis patients don’t matter, if we look at the money that’s been spent on COVID,” Vanstone said.

She said the difference gene modulating drugs have on patients’ lives cannot be understated.

“It’s incredible because they actually correct the defect in the gene that causes the disease,” Vanstone explained.

Her daughter, Madi, has cystic fibrosis and her health was rapidly declining eight years ago, when she was 11, before being selected for a trial on Kalydeco, which treats four per cent of people with the disease.

“For us, it was like hitting the lottery,” Vanstone said. “She did phenomenal, her lung function went from 70 to 115 per cent of expected value in a matter of 30 days. Her whole life changed when she went on that drug.”

“It’s pretty remarkable to have a disease that is changed by two pills a day,” she added.

Without Kalydeco, Madi was heading towards a lung transplant or death, Vanstone noted.

“Her and I trekked the Great Wall of China last September for five days, we did eight hours a day, up and down, raising money for CF Canada. That’s how great her health is now in comparison to where it was,” she explained.

Sasha Larocque, mother of two boys with cystic fibrosis in Tottenham, said the delay in negotiations with Vertex is incredibly disheartening.

“I don’t have the words to describe that feeling of not knowing and being ignored when you know your children’s life is literally on the line, I just never thought we’d be at this point to be quite honest,” she said.

“Not only do these drugs save lives of patients who are at the end stages of their disease, if you can get them to the patients early enough, like my children that are still young enough and stable enough, you can prevent that disease from progressing to the end stage so quickly.”

Larocque told The Times she’s even had discussions with her husband about moving to one of the 24 other countries that publicly fund the drugs to gain access to the lifesaving medication, since Canada has had so many delays.

MPP Wilson said he directed his letter regarding the pCPA negotiations to Justin Trudeau in an effort to achieve some leadership from higher levels of government since that’s what’s worked in other countries.

For example, former U.K. Prime Minister Theresa May negotiated directly with Vertex to get gene modulators approved after developing an understanding that people in her country with cystic fibrosis were needlessly suffering.

“She was shocked that they were being held up for years and she personally took it on to negotiate with Vertex,” Wilson explained.

“I’m hoping that the leaders in each of our provinces will look at this and say this is unnecessary suffering.”

By Sam Odrowski
Local Journalism Initiative Reporter

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