Status of Women Committee on Oct. 21st, 2024

[The Chair, Conservative, Shelby Kramp-Neuman]

I call this meeting to order.

Welcome to meeting number 125 of the House of Commons Standing Committee on the Status of Women.

I remind all members of the following points: Please wait until I recognize you by name before speaking, and all comments should be addressed through the chair.

Thank you for your co‑operation.

Pursuant to Standing Order 108(2) and the motions adopted by the committee on Tuesday, June 4, 2024, and Wednesday, September 25, 2024, the committee will continue its study of breast cancer screening.

Before we begin, I ask all in-person participants to read the guidelines written on the updated cards on the table. These measures are in place to help prevent audio and feedback incidents and to protect the health and safety of all participants, including the interpreters.

Welcome to our witnesses.

Appearing as individuals we have Dr. Anna Wilkinson, medical doctor; Julie McIntyre, by video conference; Dr. Paula Gordon, clinical professor of radiology, by video conference; and Dr. Shiela Appavoo, radiologist, by video conference.

From Breast Cancer Canada we have Kim MacDonald, patient advocate. From Breast Cancer Action Quebec we have Jennifer Beeman, research and advocacy adviser, by video conference; and Milena Gioia, coordinator, programs and advocacy, by video conference. From the Quebec Breast Cancer Foundation we have Karine-Iseult Ippersiel, president and chief executive officer.

We begin with opening statements.

Dr. Wilkinson, you have the floor for up to five minutes.

[Dr. Anna Wilkinson, Medical Doctor, As an Individual]

Thank you.

I'm a family doctor and a GP-oncologist. I work with Statistics Canada and the Canadian Cancer Registry to look at real-life cancer outcomes. I have a unique vantage point to understand the impacts of breast cancer screening recommendations across our entire health care system.

My research with Statistics Canada has focused on breast cancer in women in their forties. We found the incidence of breast cancer in these women has increased almost 10% in recent years and that women with access to organized breast screening programs have an earlier stage at diagnosis and significantly increased survival. We've also found that women in their forties have more aggressive subtypes of breast cancer, where the survival for cancers diagnosed beyond stage 1 drops off dramatically.

We've shown that the peak age for breast cancer diagnosis among white women is 65, but for women of other races and ethnic groups, it's typically before 50. These same women have significantly more advanced stage cancers at diagnosis. This work has been done in spite of the fact that our national cancer data has significant gaps that limit our analytical abilities.

We've established that the costs of breast cancer treatment rise exponentially with later stages of diagnosis. Our cost-effectiveness analysis has shown that screening at age 40 saves lives and saves our health system half a billion dollars annually, as it's so much more expensive to treat advanced cancers than it is to do screening.

I was an invited expert on the evidence review for the 2024 breast cancer screening guidelines, an experience that highlighted critical flaws in the process. The task force ignored our expert recommendations, with the end result being that the benefit of screening was minimized. The task force dictated the terms of the evidence review, mandated the use of old studies and insisted on too short a time frame to show the full benefits of screening. It determined the benefit of screening in women 40 to 49 by extrapolating the benefit from older women, even though trials looking specifically at women 40 to 49 showed higher benefits, in the range of 44% to 57% mortality reduction. It did the same with dense breasts and family history; it merely extrapolated the benefits observed in average-risk women. The task force had access to race and ethnicity data from StatsCan but did not act on the age of earlier diagnosis in all women other than white. We experts voiced our concerns in a limitations document, which was ignored.

Even if we use the task force bias and minimize mortality benefits of only one death averted per 1,000 women screened over 10 years, this amounts to over 2,500 deaths of 40-year-old women. This number somehow did not reach their threshold of significance, a threshold that seemed inconsistent between guidelines. The real number of deaths, based on modelling, is threefold or fourfold higher.

Concerningly, the 2018 task force 1,000-person tool, which Canadian family doctors used for six years to counsel their patients, contains serious errors. The 2018 tool notes that there were seven cancers per 1,000 women, while the 2024 tool now states that there are 19 cancers per 1,000 women. The 2018 number was incorrect. The 2018 tool used an overdiagnosis rate of 48%, while the 2024 review found this number to be 3%. These incorrect numbers caused the 2018 tool to show a minimal benefit of screening. The task force misinformed Canadian family physicians and their patients for years with the very tools designed to facilitate shared decision-making and with no apparent explanation.

The task force is a venerable institution, and busy family physicians use its guidelines to inform discussions with patients. Despite provincial practices, the task force recommendations matter. They cause family physicians to dissuade patients from screening or to not even broach the topic. They create confusion, as their recommendations are often different from specialist guidelines. They create an unconscious bias that younger women don't get breast cancer. The task force drives inequities as provinces institute different programs based on their own interpretations of the evidence.

Disturbingly, the issues we face with breast cancer guidelines are just the tip of the iceberg. We hear about breast cancer, as there are passionate advocates placing these issues front and centre. Similar outdated and nonsensical recommendations exist for lung and cervical cancers and in many other realms, broadly impacting women's health.

We must have a transparent guideline process that is nimble and responsive and reflects current evidence. Our national guidelines should be unifying and effectively incorporate Canadian subject matter expertise. We should strive for guidelines that remove barriers to accessing care, embrace an individual's autonomy to make decisions about their own health, and support equitable access to life-saving cancer screenings.

Thank you.

[The Chair, Conservative, Shelby Kramp-Neuman]

Thank you for your testimony.

At this point, I would like to welcome Ms. McIntyre.

You have up to five minutes.

[Julie McIntyre, As an Individual]

Good morning.

Thank you, members of the committee, for your efforts to protect women's health and save lives, and for the opportunity to share my story.

A year ago today, I had just finished my eighth and final chemotherapy treatment and was a few days away from my 50th birthday—ironically, the age at which I would be eligible for a screening mammogram as per the task force guidelines. I am only one of the many Canadian women who have a more advanced stage of breast cancer because of the outdated and flawed task force breast cancer screening guidelines.

My name is Julie McIntyre. I am a mom, a wife, a daughter, a sister, an aunt and a high school teacher, and in February 2023 I became one of the one in eight women diagnosed with breast cancer. I was 49 and thought I was in good health. I ate well, exercised, was rarely sick and had no direct family history.

In January 2023, I found a lump in my breast. I periodically examined my breasts—nothing formal, just enough to know my normal. I cannot imagine if I had followed the task force guidelines, which advise against self-examination, because I would not have recognized the change. I soon went to see my doctor, who sent me for both a mammogram and an ultrasound. I learned that I have category D dense breast tissue, which increased my risk for breast cancer.

I had never heard of breast density and its associated risk until my diagnosis, because my first mammogram took place after finding my lump at 49. The task force recommends breast screening starting at 50, and since breast density can be determined only by a mammogram read by a radiologist, many women in their forties, like me, are unaware of their breast density, the increased risk it can carry for breast cancer and the importance of additional screening. I am very grateful to have had an ultrasound along with my mammogram, because it identified an area of concern that was later biopsied. Two weeks after the biopsy, we were given the devastating news that I had breast cancer: invasive lobular carcinoma.

The first step in my treatment was surgery—a mastectomy—in April 2023. What was expected to be a two-centimetre tumour from pre-surgery imaging turned out to be six centimetres in size. It was three times larger, along with a second much smaller tumour. This larger-sized tumour placed me at a more advanced stage, and my treatment plan would require chemotherapy.

I was angry and upset in thinking about how much further advanced my cancer would have been if I hadn't self-examined, if I hadn't been able to get to my doctor and if I hadn't had both a mammogram and an ultrasound, but also about the fact that if I had entered a screening program at the age of 40, had been informed of my breast density and had been regularly screened, my cancer might have been caught earlier, and I would have been spared some of the harsh side effects of aggressive treatment. Most importantly to my family and me, I would have had an overall better prognosis. The evidence shows that early detection leads to a better prognosis and survival outcomes. After surgery came eight rounds of chemotherapy, 15 rounds of radiation, and hormone therapy, which I will be on for five to 10 years—perhaps longer.

The Canadian task force argues that screening at 40 causes unnecessary stress that comes with callbacks. As someone who has lived through breast cancer, there is no comparison to the stress and anxiety that accompany a cancer diagnosis: the deep heartache and gut-wrenching pain that come with telling your children their mom has cancer and telling your spouse and your parents; cancer treatment in the form of surgery, chemotherapy, radiation, medication and all of their side effects; losing your hair and parts of your body; side effects from medications to prevent recurrence; and living with the fear of recurrence and metastasis and wondering if every new pain is a sign that the cancer has spread.

It is a life-altering diagnosis that affects your physical, mental and emotional health, and while it was stressful waiting for the results from the biopsy, it would be even more stressful and downright dangerous to delay screening and a possible diagnosis.

I am so grateful that many provinces allow women to self-refer for mammograms starting at age 40 or 45—this will save lives—but I remain deeply concerned about the task force screening guidelines, which contribute to more advanced diagnoses and lost lives.

It is critical that the screening guidelines reflect current science and evidence around screening at 40, racial disparities in breast cancer, and breast density and other risks. It's also equally important that communication to the public and to family physicians is consistent and clear to avoid confusion and roadblocks that may prevent many women from getting the screening and care they need.

Screening starting at 40 is critical for early detection of breast cancer. It is time to listen to the science and to give Canadian women the best opportunity for early detection.

Thank you very much.

[The Chair, Conservative, Shelby Kramp-Neuman]

Thank you, Ms. McIntyre, for sharing your story.

Next, I would welcome Dr. Gordon.

You have up to five minutes.

[Dr. Paula Gordon, Clinical Professor of Radiology, University of British Columbia, As an Individual]

Thank you for the opportunity to testify on this critical issue.

I'm a breast radiologist in Vancouver, and I've been in practice for over 40 years. I watched the previous session, in which you heard compelling testimony from women harmed by the task force, and just now with Ms. McIntyre, with some needing both breasts to be removed, having hair loss from chemo, having to take time off work or worse, having to work through treatment.

Cancers in younger women grow and spread faster, so it's especially important that we find them earlier. The years of life saved by screening are greater for women in their forties than in any other decade, yet the task force still recommends that screening start at age 50, perpetuating avoidable deaths and suffering. Women in provinces that start screening at 40 are more likely to be diagnosed at an early stage. They're less likely to need chemotherapy, and they can have less aggressive surgery. That's why all women should be offered screening starting at 40.

Canadian data showed that since the task force first recommended not screening women in their forties back in 2011, the stage of breast cancers has increased, and the number of women whose cancer has spread has gone up by 10%. The task force ignored this research when making its current guidelines.

Currently, 9 out of 12 jurisdictions have lowered the screening age to 40 or have pledged to lower it. Alberta and Northwest Territories screen at 45. We are waiting for action only from Quebec, and that review is due in December. Even with all this progress, many women are still unaware that they can self-refer. Family doctors who trust the task force are not telling women about screening, and if they do, it's often to discourage it. That comes back to a power imbalance.

Dr. Michelle Nadler testified to HESA that “the task force doesn't mind” if women screen “as long as [they're] informed”. There's a strong emphasis that women must speak to their family doctor before self-referring, but the decision aid tool, which you heard about from Dr. Wilkinson, that the task force sends to family doctors is a one-size-fits-all. It does not allow for individual variation like ethnicity, family history and breast density. The only benefit it shows is averted deaths. It doesn't include the potential to avoid harsh therapy. It overstates the risks of mammograms to doctors, and it wants women to decline screening as a result.

Both women and health care professionals need education. When I lecture to health practitioners, they're shocked to hear that the task force members are mostly family doctors and that content experts are deliberately excluded. Canadians assume guidelines are made by experts. This is a breach of public trust.

All women should have a risk assessment by age 30. The task force guidelines are intended for women who are not at increased risk. However, women with a first-degree relative with breast cancer are at increased risk, as are women with dense breasts and women who've had cancer. The task force guidelines do not apply to those groups, but family doctors don't know that, and some use those guidelines for these women as well.

That said, I'd like to emphasize that 85% of women who get breast cancer have no increased risk, no family history. That's why we need to screen all average-risk women, starting at age 40. Women with additional risk factors may need to start younger or to be screened more often or to be offered supplemental tests like ultrasound or MRI, but average-risk women need to be screened. Women should receive an invitation letter on their fortieth birthday, informing them that they can now have screening mammograms. Currently, only Alberta sends invitations at age 45. Women in their forties are the sandwich generation. They're caring for young children at home and for aging parents, and they're working and contributing to the economy. They are not acceptable losses. All women in Canada deserve the opportunity for early detection.

The task force should be disbanded. We cannot wait for an expert and external review in the spring in the hopes that action will one day be taken for a newer, better, accountable task force. Women are dying needlessly now. We need the guidelines suspended now. In the interim, provincial guidelines can be used. Ontario began self-referral at 40 on October 8, and it has predicted that 845 additional cancers will be found this year. Those cancers would have been found eventually, but now they can be found at an earlier stage. A new model for the task force should incorporate experts and patients. There's no time to wait. We need to act now.

Thank you.

[The Chair, Conservative, Shelby Kramp-Neuman]

Thank you very much for your testimony, Dr. Gordon.

At this point, Dr. Appavoo, you have up to five minutes.

[Dr. Shiela Appavoo, Radiologist, As an Individual]

Honourable members of the Standing Committee on the Status of Women, thank you for reconvening this important study.

I'm Dr. Shiela Appavoo, a general radiologist with an interest in breast imaging and three decades of experience in breast cancer screening and diagnosis. I also chair the Coalition for Responsible Healthcare Guidelines.

Today I want to focus on breast screening guidelines, as well as other guidelines that affect women, specifically those from the Canadian task force on preventive health care, operating under the Public Health Agency of Canada. You have heard and will hear a lot about breast cancer science and patient experience, but I would like to talk about the guidelines and the guideline development process itself, as well as the Public Health Agency's current external expert review of the Canadian task force on preventive health care.

As you've heard, there is strong criticism of the current Canadian task force breast cancer screening draft, which again recommends against screening women aged 40 to 49 and thus falls behind recommendations from the U.S. task force, the Canadian Cancer Society and almost all the provinces.

The problem with the Canadian task force is fundamental and extends beyond breast cancer screening. Content experts have raised issues with task force guidelines in areas that affect women, such as lung cancer, cervical cancer, colorectal cancer, perinatal mental health such as postpartum depression, vision screening and pediatric developmental delay. Aside from the breast cancer guideline, none of these guidelines have been updated dating back to 2013; thus they pose risks for Canadian women and their families. This risks avoidable late-stage diagnosis of significant and life-altering diseases.

Among other issues you will likely hear today, the task force demonstrated bias in its predetermination of the results of the breast screening guideline revision. The working group chair stated in May 2023 that they didn't believe changes to the guidelines were needed from the 2018 guideline. This was weeks before the evidence review was even initiated.

The task force also biases and manipulates knowledge translation. For example, it allows information to be expressed to patients and primary care providers only on its own terms. In its communications and in the way evidence is considered, the task force consistently underestimates screening benefits while amplifying its portrayal of harms.

As an example, its “1,000-women” chart, which is offered as a decision tool, underestimates the benefits of screening and fails to address crucial questions such as the reduction of morbidity or non-death harms when a woman screens versus not screening, as Dr. Gordon mentioned. Modern studies and computer modelling estimate a very meaningful value of around a 40% mortality benefit from screening, which the task force has arbitrarily chosen not to communicate. What the task force provides is not knowledge translation, but knowledge restriction.

Although the task force supposedly operates at arm's length from the Public Health Agency of Canada, it is funded and supported by the Public Health Agency. There's considerable interactivity between the agency and the task force, yet the Public Health Agency has been given the task of carrying out an external expert review, which is now under way.

While the panel members are distinguished and appropriately include representation from primary care and population medicine, they lack disease-specific specialists. This is exactly the approach for which specialists have criticized the task force. When I asked the Public Health Agency to include representation from specialists who look after patients with the actual disease processes, I was told they had made a deliberate choice in their panel composition. This suggests that the exclusion of topic experts was fully intentional.

The so-called external review of the task force is being led by the same body that funds it. Part of the evaluation is being performed at the University of Calgary, which houses the task force.

How can these bodies, whose reputations are tied to the task force, be truly objective? This is not an unbiased or external review at all. I urge the committee to recognize the fundamental flaws, bias and lack of accountability in both the task force and the Public Health Agency of Canada's review of the task force.

The breast cancer screening guidelines, as you've heard, are deeply problematic, as are multiple other guidelines. It's essential to address these broader guideline issues affecting women and their families across multiple health topics. A good start would be to put a moratorium on the current review of the task force and to place the review in the hands of a truly external and objective body and university. We must advocate for an honest and external review of the task force and the dismantling and rebuilding of the task force to ensure a proper structure and oversight. In this way, we can arrive at safe, appropriate and modern guidelines in many fields that affect women and their families.

Thank you.

[The Chair, Conservative, Shelby Kramp-Neuman]

Thank you very much.

Ms. MacDonald, you have the floor for up to five minutes.

[Kim MacDonald, Patient Advocate, Breast Cancer Canada]

Thank you.

I almost feel compelled to applaud everyone who is speaking today.

Thank you for the privilege to speak on a topic so important to me as a survivor and to so many Canadians impacted by breast cancer.

I first want to say how shocked and disappointed I was in the task force recommendation of keeping the breast cancer screening age at 50 and how heartened I am by provinces like Ontario for lowering the age of self-referral to 40.

My story is a little different. I was being screened every six months starting at age 45 because I was considered “high risk”, but since nothing other than cysts were found, I was unilaterally dismissed from my specialist roster after two and a half years. In the end, I was the one who noticed the lump. I was the one who saw the alarming changes to my right breast as the unchecked tumour grew. I called the specialist, thinking I could get in, but I was told that I couldn't come back until I got another referral from my GP. My breast cancer could have been caught months earlier if I had continued to be screened, but it wasn't diagnosed until I had a tumour the size of a baseball—10 centimetres.

I was stage 2B, ER-negative and HER2-positive. My cancer was aggressive, and so was my treatment: eight rounds of chemotherapy over 16 weeks, a double mastectomy, 25 rounds of radiation, two surgeries to put a port-a-cath under my skin and take it out again, 18 Herceptin infusions and 64 needles in my stomach. I had to leave my job for 10 months and collect disability at the peak of my career.

This treatment saved me, and I am seven and a half years in remission and extremely grateful for that. I'm not here to gain your sympathy but rather to say that by the time women discover a lump themselves, the cancer has grown and perhaps has spread, and treatment can be traumatizing. Mammograms, MRIs and ultrasounds can discover breast cancer in its earliest stages, resulting in far less invasive treatment, ultimately saving lives and money.

I feel compelled to tell you about a friend who fought so hard to bring awareness to others on this subject. In 2017, Nadine Parsons had a sore lower back. She had X-rays done and went to two chiropractors, and still the pain worsened—for months. On January 1, 2018, she woke up and could not move. Her husband took her to emergency and, after several tests, it was discovered that not only did she have breast cancer, but it had spread to her lymph nodes and then to her bones, which is why she was in so much pain.

For the next year and a half of living with metastatic breast cancer, Nadine Parsons was an advocate, telling younger women about the signs she had breast cancer that she had missed, but because she was so young, nobody had ever suggested that she have breast screening. When I ran into her at a fundraiser and she told me her story, she was filled with such positivity and optimism that I was sure that she was going to survive, but on July 24, 2019, Nadine Parsons succumbed to breast cancer. She was one of 5,000 Canadian women that year who died from it. She was 37 years old.

Tragically, this story is not unique. Screening saves lives. It needs to be accessible. The difference between stage 1 and stage 4 is timing. I'm one of the lucky ones. I lived, and that's why I'm here today.

Dr. Jean Seely, the head of breast imaging at the Ottawa Hospital and professor at the University of Ottawa, was quoted in a report released in April of this year. She said, “Breast cancer in younger women tends to be diagnosed at later stages and is often more aggressive.” She went on, “It's alarming to see rising rates among women in their Twenties and Thirties because they are not regularly screened for breast cancer.”

There are over 50 kinds of breast cancer, and Breast Cancer Canada is investing in targeted therapies. Not every woman needs to go through what I did. Some may need a lumpectomy and a small amount of radiation. If it's caught early, they may avoid chemotherapy altogether. Research is making that happen.

When a woman gets breast cancer, it affects her entire community. The earlier it is caught, the less invasive the treatment, the less of a burden on the health care system and the less likely it is that she will die. Early screening can help save a life—like mine.

Thank you.

[The Chair, Conservative, Shelby Kramp-Neuman]

Thank you very much for your powerful testimony.

At this point, I would like to welcome Jennifer Beeman.

You have up to five minutes.

[Jennifer Beeman, Research and Advocacy Advisor, Breast Cancer Action Quebec]

It's my colleague, Milena, who will be giving the presentation.

Thank you.

[The Chair, Conservative, Shelby Kramp-Neuman]

Welcome, Milena.

[Milena Gioia]

Hello, everyone.

We thank committee members for the invitation to be part of this important discussion.

We're coming to you from Tiohtià:ke, part of the unceded indigenous lands of the Kanien’kehá:ka Nation.

It's important for us to use gender-inclusive language in our work, as breast cancer affects people based on their physiology and not their gender. We use the term “women and AFAB people”. AFAB is an acronym for “assigned female at birth”, which includes non-binary and transmasculine people who have the same risk of breast cancer as cis women do, and for us, “women” also includes transwomen, who can also be at an increased risk with gender-affirming hormone therapy.

Breast Cancer Action Quebec is an intersectional feminist organization that has been working for breast cancer prevention for over 30 years, providing education programs and fighting for better chemical regulations to reduce toxic substances in our environment and in the products that increase breast cancer risk.

Among our many different programs, we give breast cancer education workshops with women from communities often not reached by public health campaigns. We are committed to working with marginalized communities to listen to them and to empower them with the tools to take their health in hand.

Marginalized populations have very different needs and experiences regarding breast cancer, which include barriers to the existing screening program. This should be a central issue when considering expanding the breast cancer screening program to start at 40. These groups are not well served by the current screening program, and in most cases this is a reflection of the deep inequities in our health care system, which will not be solved by simply extending the program to younger populations.

Health care funding is severely limited. Shouldn't we be putting money into increasing breast cancer education and participation in the current program first, especially considering that the 50 to 74 age bracket is at the highest risk? If the program is widened to the general population, starting at 40, won't these populations face the same exclusions and barriers to participation?

Specifically, women and AFAB people with disabilities, particularly regarding mobility, have major problems with the most basic physical access to mammography screening machines and even to clinics. Disability groups have organized major campaigns to change this, with little success. This injustice has been an issue for over 30 years.

Gender-diverse people face a lack of information on basic questions of breast cancer risk, for example, how hormone therapy raises breast cancer risk for transwomen and how it may reduce it for transmen. Fully respectful health care practices are also far too rare.

Indigenous women and AFAB people are facing increasing rates of breast cancer along with all of the issues they face regarding the lack of equitable, respectful and culturally sensitive treatment in the health care system.

Black women and AFAB people are facing very specific problems regarding breast cancer, with many people being diagnosed at younger ages with more aggressive forms of the disease that are often less responsive to treatment. Also, they may participate less in existing screening programs. Lowering the screening age will not address racial disparities. In addition, Black women are facing very similar trends regarding uterine cancer, so far more work from the ground up needs to be done.

In Canada, we don’t collect race-based health data, which is a major problem and the source of many injustices. Much of the research on Black women and breast cancer has come from the U.S and the U.K., but this body of research has shown that the category of “women” cannot be treated as if they all experience breast cancer in the same way, which tends to mean the same way as white, cis, well-educated women. Gender differentiated data could also help us better serve the gender-diverse population.

The problems that all of these groups face regarding screening raises vital questions. As we all know, health care funding is severely limited. Breast cancer risk, diagnosis and treatments play out differently for different populations, so responses need to be tailored depending on these realities.

In addition, we'd like to call your attention to the lack of diversity in these two FEWO sessions among survivors, groups and experts, including the specialties and the populations they study and work with. Surely we all agree that Canadians deserve the whole picture on this important issue.

Thank you again for the opportunity for us to share our questions with you.

[The Chair, Conservative, Shelby Kramp-Neuman]

Thank you very much, Milena Gioia.

Next, we have Madame Ippersiel.

Ms. Ippersiel, you now have the floor for five minutes.

[Karine-Iseult Ippersiel, President and Chief Executive Officer, Quebec Breast Cancer Foundation]

Thank you, Madam Chair.

Committee members, thank you for having me here.

For 30 years, the Quebec Breast Cancer Foundation has been advocating for the interests and promoting the well‑being of breast cancer patients. The foundation makes a particularly significant contribution to medical and scientific advances, with investments in innovation and cutting‑edge research and in support, prevention and healing programs.

Every year, breast cancer accounts for around 1,380 deaths in Quebec. It remains the most common cancer in women. It's not only one of the most common cancers, it too often strikes the youngest people. Some 18% of diagnoses are made in women aged 50 and under. The increased number of cases in this age group has been documented.

It's widely acknowledged that screening plays a key role in reducing the mortality risk by 41%, for example.

As a result, we believe that it's vital to focus on the need for early detection in order to save even more lives.

Today, the committee is looking at screening age. The Quebec breast cancer screening program encourages women aged 50 to 74 to undergo screening mammography every two years. In recent months, the health minister has tasked the Institut national d'excellence en santé et en services sociaux with looking at the potential to expand the screening program to include people as young as 40. This is a welcome initiative.

However, it should be noted that the screening program focuses on a single risk factor, which is age. A program based solely on age assumes that all women in the same age category face the same level of risk. This isn't in line with the information available to science.

We now know that 12% of the population has more than a 10% risk of developing breast cancer before the age of 70. Approximately 50% of all breast cancers are diagnosed in women belonging to this sub‑population. In contrast, 50% of the population faces a breast cancer risk of 3% or less. In other words, breast cancer is concentrated in a relatively small portion of the female population.

Evidence suggests that other risk factors must be considered when determining each woman's risk profile. These factors include age, family history of cancer, DNA, breast density, Ashkenazi Jewish descent, hormone exposure, alcohol consumption, height and body mass index. This shows the need to move towards more preventive and personalized medicine.

As a result, the foundation would like to see governments transition from an age‑based to a risk‑based approach to screening.

With this in mind, the foundation was the first to provide funding for PERSPECTIVE, an innovative project that assessed a new screening strategy based on each individual's unique risk profile. The project led to the development of a saliva test that, combined with a questionnaire, calculates a woman's risk of breast cancer. This makes it possible to carry out customized screening and promotes early detection of the disease. The integration of this innovative approach would modernize breast cancer screening and would have many social and economic benefits.

There would be multiple benefits for patients. These benefits include earlier detection, which significantly affects the choice of treatment; higher survival rates; improved quality of life; better patient experiences; less stress from excessive screening; and a lower psychosocial impact.

The benefits for the health care system are just as significant. These benefits include more effective use of human and technical resources; improved clinical performance; better quality of care; and lower health care and social costs.

We also know that the socio‑economic burden of breast cancer is significant in Quebec and the rest of Canada. In specific terms, the average cost of care required for breast cancer treatment varies according to the stage. The earlier the cancer is detected, the lower the health care costs. In Ontario, the treatment for a cancer in situ costs around $14,000, while the treatment for stage 4 cancer costs around $370,000. This amounts to a difference of almost $350,000. Early detection is important. It could both save lives and lower costs.

Now that the PERSPECTIVE project has come to fruition, the foundation wants to help modernize breast cancer screening methods by integrating this innovation into standard health care practices.

We want governments to get on board with this new perspective, which aligns with science and which would have a major impact. Let's do this for women, for survivors, for daughters, for spouses and for mothers, too many of whom are still living with cancer.

[The Chair, Conservative, Shelby Kramp-Neuman]

Thank you all for your opening remarks.

At this point, we will go to our first round of questions.

I'd like to begin with Michelle Ferreri, for six minutes.

[Michelle Ferreri, Conservative, Peterborough—Kawartha, ON]

Thank you, Chair, and thank you so much to all of the witnesses here.

This is powerful and emotional testimony as we continue the study on the task force recommendations on breast cancer. There are many survivors who've come courageously here to the status of women committee to speak about their experiences, along with many physicians as well.

Dr. Wilkinson, you said something pretty pointed. As people have been watching this, and I've been watching the feedback online, people are saying, “Well, the provincial guidelines already say 40, or you can self-refer, so what does it matter what the task force says?”

Can you comment on that?

[Dr. Anna Wilkinson]

Certainly, I spoke to that a bit in my speech, but it really does matter.

Even though, on the ground, it seems like there is access, when the task force says, “Don't screen,” that is what family physicians take as what they should be recommending to their patients. It creates a bias, so when patients go for shared decision-making to their family physician, the family physician is already predisposed to say, “You know what, the risks probably outweigh the benefits.”

It impacts the counselling that patients get. It impacts the ability to access across our country, because some provinces do screen, some provinces don't, and some are at age 40. It also has far-reaching impacts in terms of the way that women see it. They get mixed messages. They're not sure what to do, because they hear they shouldn't screen and their province says they should screen.

Even though there are provincial guidelines that say we can screen, it's really critical that we have strong national guidance for our patients, for our doctors and for our provinces.

[Michelle Ferreri, Conservative, Peterborough—Kawartha, ON]

Thank you for that clarity.

We had witnesses who testified about who the experts were, who was actually sitting on this task force, and who was actually giving this recommendation. A lot of feedback was that people who weren't in the position to give professional recommendation were doing that on the task force.

Is this task force delving into the technology and advancements we've seen in breast cancer screening and technology, for example, AI and thermolability through heat? Has that been brought up?

I would open it to anybody who wants, but I'm looking at you, Dr. Wilkinson, as a physician.

Are they looking at these new age...? Mammography and mammograms are also a deterrent for many women. It's uncomfortable. There are many amazing emerging technologies.

Is the task force willing to look at that, as well as at what's in our food?

[Dr. Anna Wilkinson]

There are a few questions there.

First, regarding the expert involvement, the actual task force and working group for this had no breast cancer experts on it. They did have experts working with them. Dr. Michelle Nadler was one of them, but she was a non-voting member.

In terms of our evidence review group, we had three experts. However, again, we didn't have a vote, and the evidence that the review panel could pull was dictated by the working group. Even though we said, “This doesn't make sense. You were looking at the side effects of treatment, yet you were measuring the numbers of mastectomies, which, actually, in the error you were looking at, was a treatment for breast cancer, not a side effect of therapy”.... There are really basic misunderstandings in terms of the way breast cancer treatment works, and they skew the results.

In terms of looking at modern data, that is very difficult, because the way the evidence is acceptable is primarily through randomized controlled trials. Those randomized controlled trials take a long time and are very expensive to complete. For example, we did not fully look for dense breasts, the supplemental screening. Those randomized controlled trials were not included—the dense trials—because at the time there was only one round of screening, even though there was a second round published in 2021 that was not included. It's this need for completed randomized controlled trials that means we're always behind the eight ball, trying to catch up.

[Michelle Ferreri, Conservative, Peterborough—Kawartha, ON]

Thank you. I see that a lot in medicine. We're always in reaction mode instead of preventative or offensive.

Ms. MacDonald, thank you for your powerful testimony. It's great to see you here. Your testimony around Nadine was really powerful. Thank you for speaking on her behalf. I'm sure her family is very grateful for that.

You said something that I'd like to have on the record again. You talked about the timing of screening being directly tied to survival, which was your experience. I would like you to elaborate a little on why timing matters in the survival of breast cancer.

[Kim MacDonald]

Sure. Right now, at stage 0 or stage 1, if it's found that early, as it often is in screening, you have about a 99% survival rate. By the time it gets to stage 4, we're talking about a 31% survival rate. Although that number is getting better with research and the medicine that we have now, and people with metastatic breast cancer are living longer, they cannot be cured. If you are at an early stage, you can be cured with the medicine that we have today.

That's the difference between going in, getting screened and finding out you're at stages 0, 1 or 2, versus it being too late when you're at stage 3 and it's in the lymph nodes, or you're at stage 4, when it's in your liver, bones or lungs. The timing is the difference.

[The Chair, Conservative, Shelby Kramp-Neuman]

Excellent. Thank you for that.

I welcome Emmanuella to go next.

You have up to six minutes. Thank you.

[Emmanuella Lambropoulos, Liberal, Saint-Laurent, QC]

Thank you, Madam Chair.

I apologize for the darkness of my screen. I've tried to fix it, but it's not really working.

I want to thank all the witnesses for being here today to share their testimony and their expertise with us.

Milena, you spoke about the fact that Canada doesn't collect race-based data. On this issue of breast cancer and ensuring that all women get the help they need when they need it, what type of data would you suggest should begin to be collected? What exactly should we be looking for in that?