Evidence of meeting #124 for Status of Women in the 44th Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was evidence.
A recording is available from Parliament.
Liberal
Lisa Hepfner Liberal Hamilton Mountain, ON
Jennie, I think you mentioned that the task force was revived in 2009. What was it like? What happened before the task force? What did we have before 2009?
Co-founder and Executive Director, Dense Breasts Canada
We had a task force, but it was disbanded in 2005 by the Liberal government. Carolyn Bennett disbanded it. When it was reinstated in 2009, it was not done through PHAC. It was done through the University of Calgary, and somewhere along the line, an accountability structure was omitted.
Liberal
Lisa Hepfner Liberal Hamilton Mountain, ON
You already talked a little about how you would like to see the task force set up, how you would like it to be different. Do you have anything further to add on that?
Co-founder and Executive Director, Dense Breasts Canada
We definitely would like to see specialty societies involved in the guidelines, and patients and content experts as well.
Liberal
Lisa Hepfner Liberal Hamilton Mountain, ON
We also heard today that Ontario just lowered the guideline to 40. I had a different experience from all of you. When I turned 40, my family doctor in Ontario said, “It's not the guideline, but you're 40 so I'm going to send you for breast screening.” It seems to depend on the family doctor you get.
If the province has reduced the screening to 40—and most provinces have—what is the impact of the federal guidelines? Does it matter? Do doctors listen to them? I'll start with you, Jennie, but then I'll ask the rest of you to comment as well.
Co-founder and Executive Director, Dense Breasts Canada
It's their bible.
Listen, as Carolyn said, doctors can't be jacks of all trades. They follow those guidelines for prostate, cervical and colon cancers and postpartum depression—the whole gamut—and the guideline says 50. The information they are given is inaccurate and misleading and has been manipulated, but this is the information they're getting. They're being told it's less common in the forties to get breast cancer. They're not being told it's more aggressive. They're being told the harms and balances and that the benefits are not as significant in the forties. That's what doctors are conveying to their patients, focusing on the harms, so they are a huge influence. As long as we have this task force, women are going to be dissuaded and discouraged from and denied breast cancer screening in Canada.
Liberal
Lisa Hepfner Liberal Hamilton Mountain, ON
Doctors aren't paying attention to the provincial guidelines. Is that what you're saying?
Co-founder and Executive Director, Dense Breasts Canada
Some of them will still try to dissuade because the information they were given from the breast screening program focuses on the harms. It does not focus on the benefits, and we can show you that.
As an Individual
I have a little example that might help. A few years ago I went to my surgeon—it was post-surgery—and I asked him for supplemental screening because I have dense breasts. He said, “No, it's not recommended. The task force says you don't need that.” I told him that there were no oncologists on the task force, and his jaw dropped. He didn't know that. He had been telling all of his patients they didn't need supplemental screening. He said at the next appointment that ever since, he'd been recommending ultrasounds for all of his patients with dense breasts.
Doctors don't have time to be conspiracy theorists about the task force giving them bad advice. They just have to assume they're getting good advice because the Government of Canada stands behind it. This is the official word of the experts, and I don't think a lot of doctors know there aren't any oncology experts on the task force.
Dense Breasts Canada
Cheryl mentioned that power imbalance, and Jennie brought it up as well. I think the reality—and we all said it—is that despite what is going on in the provinces, which is admirable, laudable and great, and despite the women who are proactive and confident in their decisions and maybe had someone tell them to get it done, there is a material difference in what information you're getting depending on who your doctor is.
The fact of the matter is, the Province of Ontario is still saying, from the narrative and literature surrounding this rollout, that you should have a discussion with your doctor. If your doctor is telling you, based on the information from the task force, that the risk of a false positive, which is a misnomer, is very high and that's scary, or that you might be overdiagnosed and that's dangerous or that there's radiation—all these fallacies—then yes, that does bear on your decision. We know that despite what's going on in the provinces, as we all said, the task force holds clout. It is very well established and deep seated, and it does take a lot to move the needle on people's entrenched beliefs about the value of screening.
Conservative
The Chair Conservative Shelby Kramp-Neuman
Thank you, Ms. Holland.
Andréanne, you have two and a half minutes.
Bloc
Andréanne Larouche Bloc Shefford, QC
Thank you, Madam Chair.
Ms. Wahamaa‑Deschenes, I'd like to end on a positive note. Could you tell us about the fund you created, Trust Your Bust? I want to give you a chance to talk about what you've been able to accomplish despite the ordeal you've been through.
Founder, Trust Your Bust, As an Individual
I created the Trust Your Bust fund through the Northeast Cancer Centre in Sudbury and was able to raise money to help with research through Rna Diagnostics in Sudbury. I was also able to help families like Janicka's. She had three young kids. It was going to be Christmas, so the community got together and got some Christmas gifts for these young kids.
I think there are a lot of funds at the different cancer centres. Again, it's about bringing awareness. Trust Your Bust is about everybody under the age.... They tell their stories.
One other thing I would recommend is including men. What stats do you have on the 1% of men? Again, Greg Baiden was 28.
Bloc
Andréanne Larouche Bloc Shefford, QC
Thank you for the work you're doing. It's an admirable thing.
I'd like to end with Ms. Holland.
Ms. Holland, we've talked about research, and the importance of taking action sooner and investing a bit more in research, as well as in treatments and new technologies.
Given what you went through and your experience with treatment, why is it important to keep investing further and not neglect research? Why is that important for the future, for victims and survivors?
Dense Breasts Canada
Absolutely. That's a really valid point.
What's interesting is that as treatments are getting better and survivors are living longer, the need for more therapies and more therapeutics to ensure there's a good quality of life really is critical. There are certain drugs now that are beneficial in preventing recurrences, but the studies on them are still limited by the pool samples.
Conservative
The Chair Conservative Shelby Kramp-Neuman
Thank you so much, Ms. Holland and Andréanne.
Leah, you have two and a half minutes.
NDP
Leah Gazan NDP Winnipeg Centre, MB
I have a question for everybody. We've heard a lot about the power imbalance. I know we have only two and a half minutes for all the witnesses, but what do power and justice look like for you in that relationship?
We'll start with Madam White.
As an Individual
Ultimately, a shared decision has to be the patient's decision. When you go into a doctor's office, they have all the knowledge of the science. They're supposed to coach you, but you're supposed to make the decision: “This is what I want for myself. Based on everything you've told me, this is what I think is best.”
Having access to screening when we want it is what we need.
Dense Breasts Canada
I agree, absolutely.
I'll go back to my point about having the appropriate information. We don't suppose that we're experts in medicine, but we do ultimately bear the risk for ourselves. We should be given accurate and true information to make decisions and so we can refer ourselves.
Founder, Trust Your Bust, As an Individual
I'd go back to the oncologist. She wasn't listening to me and I had to trust my body with her. When I said no, she blocked me. She almost threatened me. That was before my first chemo.
Co-founder and Executive Director, Dense Breasts Canada
I agree about having accurate information. We need public awareness campaigns. Also, women should not have to advocate so hard. They should not have to be crying and demanding. The onus should not be on women.