Status of Women Committee on Oct. 9th, 2024

[The Chair, Conservative, Shelby Kramp-Neuman]

I call the meeting to order.

Welcome to meeting 124 of the House of Commons Standing Committee on the Status of Women.

I would like to remind all members of the following points.

Please wait until I recognize your name before speaking, and as a reminder, 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, and Wednesday, September 25, 2024, the committee will commence its study of breast cancer screening.

Before I begin, I would like to 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 incidences and to protect the health and safety of all participants, including the interpreters.

I would like to welcome our witnesses. Appearing as an individual, we have Cheryl White. Appearing by video conference, which we're trying to get set up and connected, is Dr. Jean Seely, professor of radiology in the faculty of medicine at the University of Ottawa, and Kimberley Wahamaa-Deschenes, founder of Trust Your Bust.

From Dense Breasts Canada we have Carolyn Holland and Jennie Dale, co-founder and executive director. She is joining us by video conference, which we're trying to coordinate as well.

At this point, we will begin with our opening statements.

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

[Cheryl White, As an Individual]

As a patient who has been negatively impacted by difficulty accessing mammograms in Canada due to task force guidelines, I would like to thank this committee for inviting me to speak today. Many women have found themselves in similar circumstances who will feel seen and heard. Through treatment, I heard many stories of fellow patients, friends and families with the experience of delayed diagnosis. Many Canadians have lost a young woman in their life.

When I was 39, my doctor told me that she had been reading, and that since screening at 40 was a shared decision, she wanted me to start thinking about it. She suggested that a benchmark at 40 would help us watch for changes and be proactive. I agreed—that sounded very wise. Unfortunately, within the year she suddenly retired and closed her practice. It took me some time, but eventually I found a young doctor accepting new patients.

One of my first requests was for a screening mammogram. She refused, explaining that it was not recommended. I insisted, but again she refused. I would ask again the following year—but again no. I knew I couldn't get a second opinion, as I was asked to sign a contract that I would not use walk-in clinics. I knew if my doctor removed me from her roster, I would be unable to find another due to the doctor shortage.

Then I found a lump. At first I dismissed it. I felt that since she had been so firm on not authorizing a mammogram, the appointment would be challenging. Eventually I did go, and two weeks after my 43rd birthday I was diagnosed with a locally advanced cancer with lymph node involvement. My family doctor called me between appointments. She was crying on the phone, but I didn't have the time or energy to comfort her. I think the guidelines cause harm to the doctors who follow them too.

Sure, the biopsy scans and all of the processes of diagnosis were stressful, but so was trying to advocate for my care to my doctor in the first place. I wonder about what if my first doctor hadn't retired or if I'd taken the chance and gone to a walk-in clinic to ask for a requisition. There is a power imbalance between doctors and patients, which makes shared decision-making impractical. Unless patients can access screening without their doctor's permission, it is essential that women in their forties across Canada be allowed to self-refer. If I had been able to self-refer, my cancer may have been caught earlier.

The consequences of delayed diagnosis for me may not end my life prematurely. However, the treatment effects are awful and my quality of life has been impacted. The chemotherapy may have damaged my heart and other organs. I needed surgery to remove the tumour and affected lymph nodes, 29 consecutive days of radiation and a full year of targeted therapy infusions. I am currently in my fifth year of hormone treatment, which causes achy joints, mood changes, brain fog and other unpleasant side effects. I'm lucky. I may live to old age. I may even live the rest of my life without a breast cancer reoccurrence.

When I was undergoing chemotherapy, I read the Pulitzer Prize winning book The Emperor of All Maladies, and there are four pages on the Canadian breast screening randomized controlled trial from the 1980s. I was so saddened to learn that it is widely known that the study was sloppy or maybe even fraudulent. The people involved explained the problems with randomizing patients, and still there is no indication that scientists, the University of Toronto or the journal CMAJ, where the study was published, are planning to retract the RCT.

I hope my story helps the committee in their important work. It is so reassuring that the people in your position care about the health and lives of women like me.

Thank you.

[The Chair, Conservative, Shelby Kramp-Neuman]

Ms. White, you're in a safe spot here. Thank you for sharing.

At this point, I would like to welcome Dr. Seely. You have up to five minutes.

[Dr. Jean Seely, Professor of Radiology, Faculty of Medicine, University of Ottawa, As an Individual]

Thank you, dear committee members, for the opportunity to testify today on this critical issue.

I am a breast imaging specialist at the Ottawa Hospital, where I diagnose women at every stage of breast cancer. Early detection is key. Screening detects cancers at stages 0 and 1, while cancers detected once symptoms appear are often advanced—stages 2, 3 or even 4—requiring aggressive, life-altering treatments. Seventeen per cent of breast cancers occur in women in their forties. These are often aggressive, fuelled by ovarian hormones, and there is minimal overdiagnosis in this age group. Without screening, these cancers will continue to grow unchecked. Breast cancer is the leading cause of death for Canadian women aged 40 to 55.

I was invited as an expert to work with the Ottawa panel reviewing the evidence for the breast screening guideline update. What I witnessed was deeply concerning. The task force ignored recent, robust evidence that supports lowering the age for screening to 40, evidence that the U.S. task force and numerous other countries have already embraced.

I've had the privilege of collaborating with Statistics Canada and other Canadian researchers on multiple studies. The research is clear and points to the same conclusion: The age for screening in Canada must be lowered. Our research with Statistics Canada showed a dramatic increase in breast cancer incidence over the past 35 years, with a significant 9.1% rise in women in their forties.

Last month, we published a study—again with Statistics Canada—highlighting that younger women, particularly those aged 40 to 45, are more likely to be diagnosed with aggressive breast cancer subtypes. These cancers, like triple negative breast cancer, have a poorer prognosis when detected late, with only 47% of women surviving five years after being diagnosed with stage 3 disease. However, our study also revealed hope. Early detection can play a pivotal role in improving survival outcomes. Across all subtypes, when cancer is detected at stage 1, the five-year survival rate is greater than 96%.

Any argument that stage doesn't matter because we have good treatments today is very misleading. In Canada, the five-year survival rate for stage 1 breast cancer is nearly 100%, but it plummets to a devastating 23% when the disease is stage 4.

In another study, we analyzed provinces with screening programs for women in their forties, like Yukon, P.E.I., Nova Scotia and British Columbia, and we found a significant reduction in stage 4 cancers among those in their forties simply because they lived in a province that screened women at 40. Women in these provinces are diagnosed at earlier stages, saving lives and reducing suffering. This applies not only to women in their forties but also to women in their fifties whose cancers are caught earlier thanks to screening in their forties.

Another of our studies showed that screening in the forties was associated with a marked improvement in 10-year net survival and a reduction in breast cancer mortality. This isn't just about saving lives; it's also about reducing the massive financial burden of treating advanced cancer. In 2023, we published research showing that in Canada, the cost of treating a stage 1 breast cancer diagnosis is under $40,000. However, for stage 4, that cost skyrockets to an average of $370,000 due to expensive treatments like chemotherapy and immunotherapy.

In addition, we looked at cost effectiveness in Canada. We found that screening women every two years from ages 40 to 74 is not only life-saving but also cost-effective compared to screening from ages 50 to 74. Screening every year is even more cost-effective, saving $31,000 per death averted and $1,889 per life year saved. It's estimated to save over $417 million Canadian every year, which is a huge benefit in terms of cost effectiveness.

One thing that some people fear is that increased screening will increase the number of cancers and therefore increase costs. However, our research found the opposite. When we compared provinces that screen women in their forties to those that don't, we found no increase in breast cancer incidence. This is because if you don't screen in the forties, the cancers don't disappear. They keep growing and are eventually diagnosed at later, more dangerous stages.

Lastly, I'd like to emphasize the profound disparities that exist in breast cancer diagnosis across race and ethnicity in Canada.

In our study with Statistics Canada, which was recently accepted for publication, we found that while the peak age of diagnosis for white women is in their sixties, non-white women are far more likely to be diagnosed in their forties. We found that 41% of cancers in non-white women are diagnosed before age 50, compared to just 16% for white women.

Also, Black women are 1.4 times more likely to die from breast cancer. These women often develop aggressive subtypes of the disease, but even these aggressive cancers can be treated effectively when caught early. Screening at age 40 isn't just a matter of science; it's a matter of equity.

We cannot allow outdated guidelines to persist when the evidence is clear, overwhelming and urgent. We must demand that our health policies reflect the latest scientific evidence and best practices. We must act now in Canada. Many lives depend on it.

Thank you very much.

[The Chair, Conservative, Shelby Kramp-Neuman]

Thank you, Dr. Seely.

Next I welcome Ms. Wahamaa-Deschenes.

You have up to five minutes.

[Kimberley Wahamaa-Deschenes, Founder, Trust Your Bust, As an Individual]

Good afternoon. Bonjour. Aaniin.

Madam Chair, vice-chairs, committee members, fellow witnesses and guests, my name is Kimberley Wahamaa-Deschenes and I'm from Sudbury, Ontario. I'm here today not only as a witness for the study of breast cancer screening for women age 40 and over, but as a breast cancer survivor. I was diagnosed at the age of 47, when mammograms were recommended for those 50 plus.

On April Fool's Day in 2013, I found a lump the size of a ping-pong ball on my left breast. It was no joke. In May, I had a biopsy. In June, I was diagnosed with stage 2 breast cancer. In July, I had a lumpectomy. From October to December, I received four chemotherapy treatments. My hair started falling out 12 days after my first chemo treatment. I literally pulled out and shaved the rest of my hair. I started my radiation therapy in January 2014, and finished 30 radiation sessions by the end of February.

Eleven years ago, with 11 months of treatment, under the age of 50 and with no family history of breast cancer, my life changed forever. I asked myself, “Will I survive this diagnosis? What can I do?”

First, I purchased my family tombstone and plot and put my name on it with a cancer ribbon, because who knows? I worked throughout my treatments. I was an events manager. I couldn't afford not to be and I had events to run. I created the Trust Your Bust fund through the Northeast Cancer Centre and raised over $18,000 by producing awareness events, such as a high tea, a Halloween party, a pink-labelled beer and a skate with my pink wig and my Trust Your Bust jersey at a Sudbury Wolves game, to name a few things. Funds went to breast cancer research, awareness and families in need.

I did some local research and found that many women in my community had developed breast cancer under the age of 50. I invited 12 women and one man—as 1% of men will develop breast cancer—to share their story in my “Calendar of Hope”. I sent a copy of my calendar to the minister of health at the time, the Honourable Deb Matthews, asking why mammograms were only given after the age of 50.

With no response, I continued my advocacy. Through my “Trust Your Bust” fund, I helped a young woman, Janicka Faye, who was diagnosed with breast cancer on her 27th birthday. She started a journal, entitled “Fight to 28”. She reached her 28th birthday but later passed away, leaving three young girls, a husband, her parents and her siblings behind. She died at the age of 28—not 40 and not 50. I can't imagine losing a child at the age of 28. When my son turned 28 two years ago, I thought about us and Janicka Faye and her family.

I presented my raw story as a survivor to high school students and women's groups and was asked to present at NOSM University to first- and second-year learners. My presentation is now part of the NOSMU curriculum, showing a patient's perspective for the first time. The students came up to me crying and thanking me for my story of the good, the bad and the ugly so that they could be more prepared as they become doctors.

We've come a long way in education, research, treatment and screening for breast cancer. Early detection is key. Many women with dense breasts avoid mammograms, so companies like Radialis in Thunder Bay have developed a non-invasive PET screening process for breast cancer patients, and Rna Diagnostics in Sudbury has developed a technology that will lighten the treatments of breast cancer. Imagine if I had only had to have two chemo treatments instead of four. The harsh impact of side effects would have been minimal.

Had I not trusted my bust at the age of 47, I might not be here today. I celebrated my 59th birthday last week.

My question to all of you is this: Why should there be a minimum age barrier for mammogram testing? Wouldn't more lives be saved if the test was made available to people regardless of age? What if the focus, instead, was on providing more education to increase awareness, self-examinations and early testing?

In my courage, strength and hope, I believe that removing the age barrier from mammogram testing and breast screening would result in early detection. Thus, more lives would be saved.

Thank you. Meegwetch.

[The Chair, Conservative, Shelby Kramp-Neuman]

Kimberley, thank you very much for joining us and sharing your story today.

I would like to invite Ms. Holland and Ms. Dale to speak for up to five minutes.

[Carolyn Holland, Dense Breasts Canada]

Thank you so much.

My name is Carolyn Holland. I'm here today not just as a 46-year-old breast cancer patient, but as a mother, wife, sister, daughter, colleague and friend.

As a volunteer with Dense Breasts Canada advocating for earlier screening, I'm thrilled that Ontario lowered the age to 40 yesterday. Unlike the Canadian Task Force on Preventive Healthcare, Ontario listened to experts and followed current evidence.

I'm excited for women to have the opportunity to detect cancer early and avoid the lifelong repercussions I face from not having had the chance. My doctor never raised the topic of screening in my forties, and by the time I discovered a lump at the age of 43, the cancer had already spread to my lymph nodes. My life has been forever changed by these dangerously outdated guidelines.

The 2024 guidelines are similar to those my family doctor followed three years ago. I am concerned that recent gains from more provinces adopting self-referral at 40 will be undermined by the ongoing influence of misinformation from the task force, which may dissuade women from screening.

Task force representatives insist that women discuss the so-called harms and benefits of mammograms with their doctors before booking. Informed decision-making requires accurate information, yet doctors are not being instructed to tell women the truth: that cancers are often more aggressive in the forties, with the highest years of life lost to women diagnosed in their forties. Instead, doctors are instructed to say that the risk of breast cancer is low in this age group and that screening is less beneficial than for older women. They share the task force's exaggerated harms of false positives, which are really just callbacks for more images, and they flag theoretical overdiagnosis, a risk that is minimal for women in their forties.

Doctors also rely on the task force's 1,000-person tool, but its flawed one-size-fits-all approach ignores personal risk factors like ethnicity, family history and breast density. The only benefit this tool considers is the decreased risk of dying of breast cancer and not the years of life gained or the benefits of avoiding mastectomy and chemotherapy. It presents women with a limited view of the benefits of screening over the next 10 years instead of much greater lifetime benefits. This messaging misguides doctors and patients and denies women the full picture they deserve to make a truly informed decision.

As long as the task force guidelines remain unchanged, Canadian women will continue to receive misleading information that downplays the life-saving benefits of early detection.

Thank you.

[Jennie Dale, Co-founder and Executive Director, Dense Breasts Canada]

This misinformation campaign extends beyond doctors' offices to the way the task force frames its methods, communicates in public forums and dismisses legitimate concerns.

The task force misled the public by claiming that experts were meaningfully included in the guideline update process. However, expert advisers revealed that their input was often dismissed, with the task force dictating which evidence to consider, including outdated trials from 40 to 60 years ago that don't reflect current technology or treatment advancements. These experts were excluded from voting on the guidelines. The task force cast doubt on the integrity of these experts in the media by suggesting they have conflicts of interest. The task force claimed only its members are neutral.

In reality, even before the evidence review began, the task force co-chair stated to the media that the guideline against screening in the forties did not need to change. This resulted in a predetermined outcome orchestrated by a panel with a troubling anti-screening bias. PHAC refused to remove the co-chair despite repeated evidence of her lack of objectivity.

The task force would have Canadians believe that early cancer detection is unimportant because we have effective treatments. In reality, the stage of diagnosis is critical to survival, regardless of treatment advancements.

Data from Statistics Canada contradicts the task force's claims. When aggressive triple negative cancer is detected at stage 1, the five-year survival rate is 96%, but at stage 4, it plummets to 7%. Early detection is life-saving.

The task force misled Canadians by claiming that it included current evidence in its update. In reality, its grading system undervalues current observational studies, as well as studies that highlight critical trends, like the rising incidence of breast cancer in younger women and the racial disparities. The U.S. task force recognized the credibility of this evidence and lowered the screening age to 40.

Although our task force acknowledged that many ethnic groups face earlier onset and higher mortality rates from breast cancer, it chose to leave the guidelines unchanged and discriminatory, calling for more research while ignoring the existing data that demands immediate action.

Our examples today show how the task force misled the public and health care professionals, operating without accountability, ethical oversight and scientific integrity. The evidence for screening at age 40 is irrefutable. Current guidelines must be suspended and revised to reflect modern inclusive evidence. We must act now to stop avoidable late-stage breast cancer diagnoses and the needless loss of life of Canadians.

Thank you for allowing me the honour of testifying today, and thank you for all the work you're doing for the well-being of Canadians.

[The Chair, Conservative, Shelby Kramp-Neuman]

Thank you to all witnesses for your testimony and your remarks.

At this point, we will move to rounds of questions from members. I would like to acknowledge to members that Dr. Seely needs to sign off at 5:30, so just keep this in mind when you are posing your questions.

I'd like to start with Michelle, for six minutes, please.

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

Thanks, Madam Chair.

Thank you to our witnesses for their powerful testimony today. It's obviously emotional too. October is Breast Cancer Awareness Month, so it's fitting that at the status of women committee we are delving into this. Thank you for being here.

Cheryl, if I can call you Cheryl, your testimony about your experience was emotional and powerful, and I think pretty much anyone who's been through the medical system, regardless of having breast cancer or not, and is trying to advocate for something when they know something is not right with their body can really resonate with what you spoke of today.

How old were you when you first started advocating to get breast screening?

[Cheryl White]

My previous physician was talking to me about it when I was in my late thirties. I'm not sure, but I was probably 38 or 39, and she retired shortly after. Then I found a new doctor, so it was probably at 40, maybe 41, that I was asking for that. It was because my prior physician had encouraged me to do so. She'd been doing some reading, and she said, “I think you do need to be screened at 40.” It was around 40, and I was diagnosed two weeks after my 43rd birthday.

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

I feel like there's a bigger conversation that you've brought up. We're talking about breast cancer, and the statistic dropped here today that breast cancer is a leading cause of death in women ages 40 to 55 is pretty shocking. What's left out of that stat is the number of women, families and children who are negatively impacted, not just by death but by the sickness itself and the disease itself. That is also a statistic we should be considering.

The bigger picture that I feel you have dropped in this committee, which needs serious evaluation, is from the words you used: power imbalance. I think a lot of us sitting around this table have aging parents or we've seen this. If you do not advocate and fight, you don't get anything. We don't have enough doctors. There's a massive imbalance because you're afraid, and you'll take whatever you can get.

Your testimony is very powerful. The answer that I hear from you—and what I'd like to see put in the report we're going to do—is the concept of self-referral. This is your body. I'd love you to expand on how you feel about that.

[Cheryl White]

I don't understand why we can't. People talk about the harms of mammograms, but the only harm I can think of is the $75 cost of getting one. Being told that you might have cancer and that you need a biopsy is terrible, but it's much worse to miss that.

Lots of people I know have heard my story. They've self-advocated and they've struggled. They've had a hard time getting a mammogram because their doctors have also told them no. I just don't understand why Canadian women can't access the care they need, which is a mammogram at 40 or even younger.

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

I agree with you. You hit the nail on the head. What I think is one of the underlying causes, which I think they're hiding behind, is, as you said, the $75 cost. They want to hide behind science but I think it's numbers.

I'm wondering if anyone on this committee knows—and I would point to Dr. Seely, being that she's a doctor—whether cost is an issue. Is it thrown at you that we can't do these screenings because it's going to cost the system too much money? Is that ever brought up?

[Dr. Jean Seely]

Thanks for the great question.

This is not directly brought up, but it's always an underlying concern that the costs of screening outweigh the benefits. We showed with a cost-effectiveness study that it would save over $400 million per year if we screened women, because we're shifting the cost away from treating breast cancer at advanced stages to being able to diagnose more women at early-stage breast cancer.

There's still a great deal of resistance about understanding this. We have to really emphasize that the costs we've estimated for cost-effectiveness underestimate the cost of advanced-stage breast cancers.

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

Dr. Seely, I do not want to interrupt you, but I only have 30 seconds left.

Saying “underestimate” is being kind. You're not accounting for the lost work. I don't even know how you would do a cost analysis of that. I'm looking at you guys shaking your heads, and to say that the cost outweighs...is bonkers to me. It doesn't make any sense.

I'd love to see more push-back and see some economics and stats come forward on the lost revenue, the work production and all of the things you have to do. There is travelling to doctor's appointments, parking tickets, being in hotels and all of the other things that accumulate when you are dealing with sickness. We don't have a health care system; we have a sick care system.

Thank you.

[The Chair, Conservative, Shelby Kramp-Neuman]

Thank you, Michelle.

Next I would welcome Emmanuella.

You have six minutes.

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

Thank you, Madam Chair.

Thank you to all of our witnesses for being here today to share your stories with us. I know that it takes a lot of courage to do so. These are really difficult topics, and they have affected your lives in a very negative way. We appreciate learning from your experiences here today.

My first question—and anybody who has the answer can answer it—is about the task force claiming there's not enough Canadian evidence to make changes. What would you recommend the federal government do? In what ways can the federal government help that situation to change so there is enough evidence going forward?

[Dr. Jean Seely]

If I can politely state it, there is overwhelming evidence, and there is absolutely no need for further study. The claim the task force makes that there is insufficient evidence flies in the face of all of the incredibly strong evidence that made up the reason the U.S. lowered its screening age to 40. It's why many Asian countries and European countries start at age 40. To delay changing these guidelines for a claimed lack of evidence is simply a tactic to avoid facing the reality of what exists. I would strongly urge the committee not to look at doing any further research when there is so much evidence to support making this change.

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

I agree with you that there is evidence out there. That's why the U.S. made those changes. Clearly it's pointing to something.

We spoke a lot about how different communities are affected in different ways and how certain communities peak at age 40 while white women peak at age 60. Does Canada have research studies that have been done on that?

[Dr. Jean Seely]

We just had our paper accepted for publication. It was shared with PHAC and the task force, so they are aware of it. What the data shows, what this research shows, is that out of over 117,000 women diagnosed with breast cancer in Canada, Black women, Asian women and non-white women have a peak incidence of breast cancer at under age 50 in a majority of women and are more likely to be diagnosed with stage 3 breast cancer under age 50 than white women are.

The ethnicity and race genetic factors at play in the U.S. are the same ones we're seeing in Canada. This also affects indigenous women. We have very strong evidence that this is the same issue, and again, it is why there's such an equity issue at play in Canada. By not lowering the screening age, we discriminate against these women and prevent them from being diagnosed at an early stage.

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

Thank you.

We know that sometimes mammograms are not necessarily the best test to do for women who have dense breasts. What would members of the Dense Breasts Canada organization recommend to our committee regarding women with dense breasts?

[Dr. Jean Seely]

I can start and then I'll turn it over to Jennie Dale.

Dense breasts absolutely are an issue. For us, it means that our mammograms are not as effective at diagnosing breast cancer. We know that, overall, about 40% of women have dense breasts, and under the age of 50, about 50% of women have dense breasts. That means 50% of women have non-dense breasts, and the mammogram works beautifully in those women. For women with dense breasts, we recommend additional screening. You have to start with a mammogram because it's the only way that's been shown to reduce breast cancer mortality, but we need to add other screening tests. Very strong evidence exists to add either a breast MRI every two years or a breast ultrasound every year. That's the best way to identify early-stage breast cancer.

I'll let Jennie Dale add to that.

[Jennie Dale]

Thanks, Dr. Seely.

We have the technology in Canada to detect additional cancers in dense breasts, but we are not using it. Only Alberta uses 3-D mammography for screening and uses it in about half the clinics it has. We have the MRI. We have the ultrasound.

Women across the country have difficulty accessing even an ultrasound, and in many provinces, they're flat out refused. It's inequity across the country. We don't have the same chance to find cancer early. It's dependent on where you live. We would like to see more use of the technology we have, to help find cancer early.

One of the reasons the provinces are not offering supplemental screening for women with dense breasts is the task force. It recommended against supplemental screening, and it did not do its own evidence review on dense breasts. It just followed what the U.S. said.

Ontario did a comprehensive 300-page review on density. It recommended supplemental screening for women in category D. The task force totally ignored it. It ignored the randomized control trials on density. That's the major reason we can't access the screening we need.