Steven James of Chilliwack, on Feb. 10, 2020.

Steven James of Chilliwack, on Feb. 10, 2020.

B.C. mom’s drug-pricing petition on behalf of son garners thousands of signatures

Petition geared to gaining access to new medicines drew support of Chilliwack-Hope MP Mark Strahl

A nationwide petition initiated by a Chilliwack mom about getting access to life-saving medicines has amassed more than 17,000 signatures in one month.

The House of Commons e-petition initiated by Jocelyn James on behalf of her son, Steven, called on the federal government to repeal changes to the Patented Medicine Prices Review Board’s (PMPRB) drug-pricing guidelines.

The campaign that closed on May 20 drew support of Chilliwack-Hope MP Mark Strahl after he heard from James about the devastating impact that lack of access to new treatment was having on her family.

READ MORE: E-petition launched from Chilliwack

They now hope it will lead to action on the federal stage since tens of thousands of Canadians agreed with James about the regulatory process around approving new medicines.

“Through this petition to Parliament, I committed to working with Jocelyn to raise awareness of this issue,” Strahl said in a release. “It’s clear that the thousands of Canadians who signed the petition share the same concerns about access to new, life-saving drug treatments.”

James wants the federal reps to think twice now, and said she is “truly grateful” for the support.

“I hope that the federal government will see this and do everything in their power to make sure the changes are right for all Canadians before moving forward with implementation,” James said.

The MP also saw the merit.

“New medicines can be a lifeline to those suffering from painful and debilitating illnesses for which conventional medicine has provided little help,” said Strahl. “Thank you to Jocelyn for creating this petition and thank you to each person who added their name, sending a message to the federal government that the changes being made to the PMPRB in Ottawa could deny Canadians access to life-changing therapies.”

“Canadians who need new or novel medications, or those who do not respond to traditional or generic treatments will be left to suffer.”

The proposed price restrictions have already stopped some new treatments from coming to Canada.

Steven, the 16-year-old son of James, loves playing hockey, soccer and being a referee. He also struggles with cystic fibrosis (CF).

“He’s one of the people dramatically affected by this,” James said, estimating that these regulatory changes will impact more than three million Canadians.

Up until the age of 13, Steven was relatively healthy and running track competitively, as well as playing other sports, but saw a decline in the wake of a lung infection a few years ago, his mom told The Progress.

One of the meds currently unavailable in Canada has “revolutionized” treatment for CF patients elsewhere. Becoming known as a “CF wonder drug,” Trikafta is one such medicine.

But this new class of meds, known as “modulators” won’t get approval under the rules, even though they are designed to correct the malfunction in the gene, not just treat the symptoms of CF.

In 2019, after the release of proposed PMPRB changes, Heath Canada has seen only 15 per cent of the new medication applications submitted to the US FDA, and the number of clinical trials started in Canada declined by 60 per cent compared to same period in the previous four years.

The House of Commons petition e-2546 amassed 17,293 signatures from April 20, 2020 to May 20, 2020. See the full text of the petition:

https://petitions.ourcommons.ca/en/Petition/Details?Petition=e-2546

READ MORE: U.S. watches as Canada overhauls drug-pricing


Do you have something to add to this story, or something else we should report on? Email:
jfeinberg@theprogress.com


@CHWKjourno
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