Brenda Chambers-Ivey is a community ambassador for Cystic Fibrosis Canada living in Kenora, and she talks about her life during the pandemic.
"I'm going to be very, very cautious and I certainly won't be one of the people that's rushing out there to go to the garden centre or go out for dinner or anything of that sort. It's going to be a long time, before my life gets back to normal," she says.
Cystic fibrosis -- like the coronavirus -- impacts the function of the lungs, and Chambers-Ivey is a double-lung transplant recipient. Chambers-Ivey adds there are many others, who have underlying medical conditions and are at greater risk. They include people with diabetes, heart conditions or cancer.
For many years now, Cystic Fibrosis Canada has been advocating for the use of new drug therapies, which might help members, who are also battling COVID-19. Tammy Jarbeau is a senior media relations advisor, who offers a response on behalf of the federal government.
"Health Canada recognizes the need for therapies that can help Canadians with serious or life-threatening conditions, and continues to encourage manufacturers to bring their therapies to the Canadian market. Health Canada has been in contact with Vertex Pharma with regard to their cystic fibrosis drug, Trikafta. At this time, Vertex Pharma has not provided a submission to market Trikafta in Canada. While Health Canada would welcome a submission from Vertex Pharma for Trikafta, it is up to a manufacturer to decide whether it chooses to seek market authorization for its product," she said in an email last week.
As of April 21, the government had received 82 requests for access to Trikafta for 91 patients. Last November, Health Canada also published a draft set of new guidelines for consultation with stakeholders and the public. Extensive feedback was received and the department intends to issue a revised draft set of guidelines later this spring for further public consultation prior to finalizing them.
Cystic fibrosis patients have also been lobbying with the provincial government, but it's been a slow process, says Chambers-Ivey.
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