Status of Women Committee on June 11th, 2024

[Anna Roberts, Conservative, King—Vaughan, ON]

What I'm thinking here is that, if I had a situation where there was a family history of it, I would try to find the money somewhere to help the individual get that genetic testing, if we could avoid—

[Dr. Pamela Hebbard]

If you don't mind, because I think this is fruitful point about getting genetic testing. The challenge is that genetic testing always works best if someone in your family who has had the cancer is the first one to get genetic testing. Actually, across Canada, which would be a whole other discussion for us, there is a varied landscape of how easy or how hard it is to access that testing, and provincial guidelines do not agree.

When you haven't had cancer and you opt for a genetic test, then there is some nuance to it, because if you come back with a gene, that's helpful. However, if you come back without a gene it doesn't tell us whether your family is carrying a gene and you didn't get it so that you're actually relatively low or population risk, or whether there is something else going on in your family—all the mix of small genes that we can't measure, lifestyle choices, our environment—that goes into your risk and you are still at elevated risk for breast cancer.

Testing people who haven't had cancer comes with difficulty, and that's where our medical genetics colleagues are really important in that, and I do think it probably.... I'll stop now because it's a bit different.

[The Chair, Conservative, Shelby Kramp-Neuman]

Thank you, Dr. Hebbard.

Thank you, Anna.

Marc, you have five minutes.

[Marc Serré, Liberal, Nickel Belt, ON]

Thank you, Madam Chair.

Thank you to all. I echo what was said earlier. I've been here on the status of women committee now for seven years, and this is probably the most insightful panel of witnesses that we've had—I mean, we had some good witnesses in the past—and I want to thank you for the work and commitment.

Also it's shocking, I think, what we're hearing today.

Dr. Appavoo, we talked about the guidelines of the U.S. and some of the recent evidence that the Canadian task force didn't take into consideration. I want to talk about that, but first, you talked a bit about the composition of what the membership should be.

Can you enlighten the committee with your recommendation on what the composition of the task force should look like? There seem to be some issues there.

[Dr. Shiela Appavoo]

Right now the task force is deliberately made up of people who are not content experts. They are experts in their own fields, you know, but they are not experts in the topic that they're handling. They do that because, again, it's this idea of not having skin in the game or not having bias or conflict of interest, but I think it's throwing out the baby with the bathwater because, then, you not only eliminate bias or at least specialist bias.... Actually, you don't eliminate bias because they're biased. Everybody has bias.

In my opinion it should be—and I think this is probably what most Canadians believe to be true already—experts in the topics who are leading the guidelines, and methodologists at their side assisting them, sort of shoulder to shoulder, working together towards good guidelines for Canadians, and not this idea of leaving the experts out of the room.

I always liken it to school kids marking their own homework and shutting the teacher out of the room. They give themselves good marks, so it seems well and they have good marks, but they don't know what they don't know. Unfortunately, they need better guidance from people who do understand the context and nuances. You cannot use a blunt tool like GRADE, which allows you to include only, for example, not diverse data—it's a very blunt tool—and expect to get a good understanding of what the nuances are.

[Marc Serré, Liberal, Nickel Belt, ON]

Thank you.

Dr. Appavoo, you mentioned the studies on cervical cancer and others.

To Dr. Rushton and Dr. McKerlie, we saw other reports that for women's health, in general, studies have been at the bottom of the list, either from NSERC, university or government studies. It seems like we have the group here from Manitoba who seem to agree with the task force recommendations, but in general the data seems to be either not there or not being looked at.

What are your recommendations to the federal government here, the committee, to really...? I know there's more money needed for women's health on the study side, but what recommendations...? What seems to be the glitch here between the task force and the lack of studies, or even not following the U.S. guidelines?

[The Chair, Conservative, Shelby Kramp-Neuman]

MP Serré, you have two individuals online as well if you'd like to engage.

[Dr. Moira Rushton]

I'll be brief.

I think one big gap that I would like to identify out loud, and I can send more information, are the disutilities that are used to assess the quality of life that is gained with early detection. I was looking at this recently for the disutility.... If you treated someone for a cancer in health economics, you'll apply a certain, “What percentage of quality of life are they living during that treatment period?”

For breast cancer, and probably for many cancers—but I don't treat those, so I just looked at breast cancer—the disutilities during the treatment period are very finite and really limited to a very short period of time, which really does not reflect the patient's experience. I think if there is going to be work done, it will be looking at the disutilities of the real quality of life and the long-term quality of life impacts of our treatments, which span, in some cases, up to a decade after a cancer diagnosis.

[Marc Serré, Liberal, Nickel Belt, ON]

Ms. Shira Farber, answer quickly—in 30 seconds—please.

[Shira Farber]

I just really want to quickly address this idea that the task force is objective because they don't have skin in the game. With all due respect, the task force has been lecturing on social media, has been interviewed by the press and has published papers about the myths of the benefits of screening and the harms of screening this entire time. At least the specialists are specialists in that area. As a patient, that's who I would like making decisions about these guidelines, not people who are propelling their careers and their academic careers based on something called the myths of screening and debunking screening.

[The Chair, Conservative, Shelby Kramp-Neuman]

Thank you so much.

Next, we have Andréanne Larouche.

You have five minutes.

[Andréanne Larouche, Bloc, Shefford, QC]

Thank you, Madam Chair.

Since this is probably my last turn to speak, I would like to thank all of the witnesses for being here. It was both instructive and disturbing, shall we say, to see a bit of what is happening at present.

I would like to address Ms. Van Dusen and Mr. Raynaud from the Canadian Cancer Society.

I found an article dated the beginning of May that was published after the Canadian Cancer Society called publicly for the age to start breast cancer screening to be lowered to 40. That is a pretty big thing. The Canadian Cancer Society felt the need to speak out in the media because, evidently, it had not been consulted by the working group. That is what I asked the witnesses earlier to tell me by raising their hand. So you were one of those who were not consulted, since you had to go to the media to voice your request. The article reports the response your request received: “The Canadian Task Force respects the Canadian Cancer Society and its important work … We look forward to discussing the draft recommendations on screening for breast cancer from our comprehensive evidence review later this spring.”

I imagine you have not yet had any news and you are still waiting to discuss preventive health care with the Canadian Task Force.

What do you expect, since that article reported that the working group had replied that it wanted to discuss it with you?

[Ciana Van Dusen]

That's an important question, and I think it's a bit of a difficult one. We want to keep working with the task force while they are in the position that they are to create the guidelines that they are creating. We do think that improvements were made since the last iteration, and we appreciate at least the acknowledgement that women who want access should have access.

We just feel that it doesn't go quite far enough because it still places the onus on women to, again, know that they have access to breast cancer screening and to ask for it in a context in which.... We've acknowledged that many Canadians don't have access to health care providers. We've also heard today that, if it's not the standard, then you think that maybe you don't need it, so it undermines the inclination that we need care. We will continue to work with the task force whenever possible. We have echoed calls from other organizations to increase transparency, but obviously there are concerns with the way this has all transpired.

I don't know if you have something to add, Helena.

[Helena Sonea]

Really briefly I'll add that we also really hope that the public consultation they are currently going through as a result of these guidelines will be made public.

[David Raynaud]

I would like to add something very quickly.

Our organization is the voice of people affected by cancer, so it is important to us that those people's experience be taken into account and be reflected in these studies. That is also fundamental to our work.

[The Chair, Conservative, Shelby Kramp-Neuman]

You still have two minutes left, Andréanne.

[Andréanne Larouche, Bloc, Shefford, QC]

Ah, okay. I was thinking my time was two and a half minutes, Madam Chair. That's great, thank you.

Earlier, in response to my question, some people raised their hand to let me know they had been consulted by the working group. Ms. Van Dusen and Mr. Raynaud, forgive me, I didn't see you nod your head earlier. So you were consulted. Thank you for the clarification. I had seen Ms. Sonea's hand up, and Ms. Seely's, who is with us by video conference, and we heard their answers.

So you spoke about your expectations.

Mr. Raynaud and Ms. Van Dusen, in the article, it also says that these are guidelines. Women aged 40 to 50 are given the opportunity, or the right, to request screening. Previously, in reply to a question, we were told this was not a matter of interfering or prohibiting. Ultimately, nothing is being made mandatory; you just want to offer it. This is an effort to avoid the battle that women might have to wage to be entitled to this test. It is important to clarify that, and in fact it is in the article.

Do you have anything to add?

I see you nodding your head, Ms. Van Dusen.

[Ciana Van Dusen]

Was there a question in what you were saying?

[Andréanne Larouche, Bloc, Shefford, QC]

I would like to hear your opinion about the fact that having guidelines for women aged 40 to 50 does not mean that anything is being made mandatory, women are just being offered the choice.

[Ciana Van Dusen]

The recommendations are there, but if they create a barrier to other provinces to making this decision, I think that's a problem. I also think that it's a problem if doctors are individually using this as a recommendation in how they operate in their own practice. If you do happen to be lucky enough to have a health care provider, and your doctor says that you don't need access because the recommendations don't say so, then you happen to be out of luck or you are forced to look elsewhere for somebody who will support you in that feeling or inclination that perhaps you should be receiving screening earlier.

[The Chair, Conservative, Shelby Kramp-Neuman]

Thank you so much for that.

Leah, you have the last five minutes.

[Leah Gazan, NDP, Winnipeg Centre, MB]

Thank you so much.

Thank you to all the witnesses today.

It is just so shocking to me that people making decisions about life and death matters are not experts in the field.

There's this whole notion of bias. I spent almost 20 years in academia. There is no research that is unbiased, and you have to identify that bias. It is a non-relevant argument, in fact, that's being used. I find it horrifying.

I also found it horrifying, Dr. McKerlie, that they're using research from the 1980s that was comprised of 98% Caucasian women. If we want to talk about bias, that screams bias to me.

Would you recommend that the federal government make major investments in genetic research to identify hidden genetic factors for Black people, indigenous people and people of colour?

[Dr. Ify McKerlie]

I would absolutely agree. Right now, there's a lot of research going on in the States that shows that a large part of the issue in the racialized population, especially Black people, relates to genetics. There's a call for racialized women and Black women to engage in those clinical trials. I absolutely agree that there needs to be some investment in that, especially in Canada.

[Leah Gazan, NDP, Winnipeg Centre, MB]

Thank you very much.

My question is for you, Dr. Appavoo.

You said that the people currently on the task force are not experts. Can you expand on that? I want to understand the level on which they are not experts. Who is on this task force? I would never put myself on the task force, for example.

[Dr. Shiela Appavoo]

Again, I want to give them their credit. They are experts in their fields, but their fields are not the fields of the guidelines. For instance, the 2018 breast cancer screening guideline was chaired by a nephrologist, a kidney doctor. The guideline this time was chaired by a family doctor.

They are experts in their fields and they're experts in guideline methodology, but I think that guideline methodology needs to be the assistant to the guideline. We need to have methodologists helping to make guidelines but not completely making the guidelines without any expert guidance and without understanding, for instance, the nuances of the disease behaviour, the nuances of treatment and so on.