Evidence of meeting #113 for Health in the 44th Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was disease.

A recording is available from Parliament.

On the agenda

MPs speaking

Also speaking

Neeru Gupta  Full Professor, Department of Sociology, University of New Brunswick, As an Individual
Ruth Ann Marrie  Professor, Department of Medicine, Max Rady College of Medicine, University of Manitoba, As an Individual
Deborah Money  Professor and Head, Department of Obstetrics and Gynaecology, University of British Columbia, As an Individual
Pamela Valentine  President and CEO, MS Canada

12:40 p.m.

Liberal

The Chair Liberal Sean Casey

I call the meeting to order.

Welcome to meeting number 113 of the House of Commons Standing Committee on Health.

Before we begin, I'd like to remind all members and other meeting participants in the room of the following important preventative measures. To prevent disruptive and potentially harmful audio feedback incidents that can cause injuries, all in-person participants are reminded to keep their earpieces away from all microphones at all times.

As indicated in the communiqué from the Speaker to all members on Monday, April 29, the following measures have been taken to help prevent audio feedback incidents. All earpieces have been replaced by a model that greatly reduces the probability of audio feedback. The new earpieces are black, whereas the former earpieces were grey. Please only use an approved black earpiece. By default, all unused earpieces will be unplugged at the start of a meeting. When you are not using your earpiece, please place it face down on the middle of the sticker for this purpose that you will find on the table, as indicated. Please consult the cards on the table for guidelines to prevent audio feedback incidents. The room layout has been adjusted to increase the distance between microphones and reduce the chance of feedback from an ambient earpiece.

These measures are in place so we can conduct our business without interruption and to protect the health and safety of all participants, including the interpreters. Thank you all for your co-operation.

In accordance with our routine motion, I am informing the committee that all remote participants have completed the required connection tests in advance of the meeting.

Pursuant to Standing Order 108(2) and the motion adopted on May 16, 2022, the committee is resuming its study of women's health.

I would like to welcome our panel of witnesses and thank them for their patience. We have, appearing by video conference, Dr. Neeru Gupta, professor in the department of sociology at the University of New Brunswick. Also by video conference, we have Dr. Ruth Ann Marrie, a professor in the department of medicine, Max Rady College of Medicine at the University of Manitoba. With us here in the room we have Dr. Deborah Money, professor and head of the department of obstetrics and gynecology at the University of British Columbia. Representing MS Canada, we have the president and CEO, Dr. Pamela Valentine.

Thanks to all of our witnesses for being here. Thanks for your patience as we had to observe the established rules of this place in terms of votes taking precedence and the time allotted to allow for members to cast their votes.

We have resources here until two o'clock, colleagues. I suggest we get the opening statements from the witnesses, proceed with one round of questions, and then we'll test the will of the room as to whether we want to go further than that. I would think we should be able to get at least that far without issue, or at least I hope so.

With all that by way of introduction, we're now ready to begin with opening statements of five minutes, starting with Dr. Gupta.

Welcome to the committee. You have the floor.

12:40 p.m.

Neeru Gupta Full Professor, Department of Sociology, University of New Brunswick, As an Individual

Thank you very much.

My name is Dr. Neeru Gupta. I'm a professor of sociology at the University of New Brunswick. I'm also the equity lead with the Canadian Health Workforce Network. As such, I would like to share with you some of my thoughts on how we can improve women's health research, and in particular I would ask the committee to consider that ending the neglect of women's health research necessarily entails ending the neglect of research on women in the health workforce.

We know there is no health care without a health care workforce, and we also know that we're experiencing a health workforce crisis. Indeed, this very standing committee published a report in 2023 addressing the health workforce crisis, and yet, like much health research, that report was gender-blind. In other words, there was no mention of women, and there was no mention of any potential unintended consequences of gender-blind or one-size-fits-all policies to recruit and retain health care workers.

We know that half of the Canadian population is women, and we also know that four out of five health care workers are women, so how health research considers or neglects the health of women in the workforce as both recipients and providers of care itself is an impediment to improving health care that works for all Canadians.

The Standing Committee on Health has also heard, to my understanding, from various speakers before about a number of persistent research limitations in terms of better understanding the health of women, in particular in relation to health conditions that are specific to biological females, including ovarian cancer or menopause; those health conditions with risk factors, symptoms or modifiers that more often go under-recognized in women, such as heart disease; or those that might disproportionately affect women because of a multitude of socio-cultural factors such as depression or intimate partner violence.

All of these issues, therefore, also affect four out of five health care providers, and a double impact is the neglect of research on women in the health care workforce itself.

While health care services and health research are often considered insufficiently responsive to women's specific health needs, they are also highly dependent on women as providers of care. However, gender-based analyses of the impacts on women are much less prevalent in research and funding of research on the health workforce and the associated implications for health care improvement, including improving patient experiences, the health of populations, value for money and health care provider experiences.

That last item I mentioned is implicit in the quadruple aim, which has been adopted by health care organizations across Canada and around the world, and yet women's experiences as health care providers are understudied and undervalued.

Research is scarce on how factors salient to women drive health workforce outcomes. We know that in Canada, and around much of the world, data to support research and policy on the health workforce tend to be siloed and incomplete. The Standing Committee on Health has already endorsed the need for better, more robust and comprehensive health workforce data to help address the health workforce crisis. This includes the sharing and use of comprehensive workforce data as part of a world-class health data system as identified in the Standing Committee on Health's previous report.

The recent establishment of Health Workforce Canada offers a valuable opportunity to strengthen collaborative work on health workforce data and planning. Optimizing women's contributions and research on women's contributions to the health sector must be central in these conversations.

I would ask the federal government what role we can play to help improve Canada's health care system through improving gender equality. I would argue that prioritizing research investments on women in the health sector is essential to making health care work better for women and for all Canadians.

Closing the gap on women's health research includes scaling up research on women in the health workforce. In particular, to borrow a framework from the World Health Organization, I would suggest that there are four main areas where we can work together to help improve women's research, research on women's health and research on women in the health workforce.

The first is gender occupational segregation. We know that four out of five health care workers are women. Integrating gender science into health workforce research, therefore, is imperative to disentangling occupational segregation, which is the unequal distribution of women and men within particular job types.

If our goal is to increase the numbers of practising health care providers in Canada to help address the health workforce crisis, then we must be driven through research that helps to disentangle and understand gender norms and stereotypes, so that we can—

12:45 p.m.

Liberal

The Chair Liberal Sean Casey

Dr. Gupta, if I could, I'll get you to wind up. We're a bit past time. You'll get a chance to expand upon your opening statement in response to questions, but please bring it to a close.

12:45 p.m.

Full Professor, Department of Sociology, University of New Brunswick, As an Individual

Neeru Gupta

Okay.

I would suggest then that pay gaps, leadership, gender occupational segregation and safe environments for women in the health workforce are critical to improving the health workforce, yet research is lacking.

12:45 p.m.

Liberal

The Chair Liberal Sean Casey

Thank you, Dr. Gupta.

Next, we have Dr. Marrie from the University of Manitoba.

Welcome to the committee. You have the floor.

12:45 p.m.

Dr. Ruth Ann Marrie Professor, Department of Medicine, Max Rady College of Medicine, University of Manitoba, As an Individual

Thank you to the chair and the committee for the invitation to present today about the topic of women's health research.

I'm an neurologist and, as you heard, a professor of medicine and community health sciences at the University of Manitoba, where I hold the Waugh Family Chair in Multiple Sclerosis. I also serve as the director of the provincial health program for multiple sclerosis.

For the past 20 years, my clinical practice and research have focused on people living with MS, including the topic of women's health. Three-quarters of people living with MS—three-quarters of the people I care for—are women at all life stages.

Today, I will share key reasons why research related to women's health is a critical issue that must be addressed for women with MS and other chronic diseases.

First, women with MS must manage the challenges of decisions regarding family planning, pregnancy and menopause while concurrently managing a chronic disease.

Second, many knowledge gaps exist regarding women's health in the context of MS and chronic disease.

Third, existing knowledge tells us that women with MS experience important disparities related to women's health.

Allow me to elaborate on these points.

MS most often presents between the ages of 20 and 40 years. However, it can present in children in about 5% of people, and in later life. This means that women with MS are dealing with a disease at a time when they are completing their schooling, starting careers, building relationships and planning families. They must make complex decisions about stopping or changing their disease-specific therapies if they decide to have children. They must figure out how to parent or sustain relationships while potentially dealing with pain, fatigue and depression, as well as physical or cognitive impairments.

In a recent review of the world literature, we found that relatively few studies—about 350 out of more than 100,000 publications—focused on the topic of women's health in MS. Most of these studies focused on pregnancy. Very few studies addressed menopause—which is a life stage that all women experience if they are biologically female—gynecologic cancers, cancer screening or biologic effects of sex hormones.

The participants in these studies did not fully represent all women with MS. Most participants were white. Few were living with severe impairments due to their disease.

Focus groups have told us that these topics—menopause, cancer, sexual dysfunction, parenthood and pregnancy—in the context of chronic disease are the top priorities for future research.

Women with MS, like other women with physical impairments, are less likely to undergo cancer screening tests, such as mammograms or Pap tests. This is particularly true for women of lower socio-economic status.

Some of these disparities reflect the difficulty in finding health care providers and health systems equipped to deal with women with physical impairments who may not be able to stand unassisted for a mammogram or who need a lift to transfer them to an examination table. Women with MS, as a consequence, are more likely to be diagnosed because they have symptoms of breast cancer, rather than through cancer screening. They are also less likely to survive breast cancer.

We need far more research addressing women's health issues in women with MS and other chronic diseases. Women with MS deserve to know how their reproductive life stages and the related biological, sociological and social changes interact with their disease, and how best to manage these life stages and their chronic illness together. They deserve to have effective, accessible care, regardless of health status, that ensures they get equitable health outcomes. That research must be inclusive, reflecting the perspectives of women with many different characteristics, backgrounds and life experiences.

Thank you for your attention.

12:50 p.m.

Liberal

The Chair Liberal Sean Casey

Thank you, Dr. Marrie.

Next is Dr. Money from the University of British Columbia.

Welcome to the committee. You have the floor.

12:50 p.m.

Dr. Deborah Money Professor and Head, Department of Obstetrics and Gynaecology, University of British Columbia, As an Individual

Good afternoon. Thank you for the invitation to speak with you today.

There are many strategic documents that have been developed in Canada and globally since the recognition of the importance of sex- and gender-based research into many conditions, including, as mentioned previously, cardiovascular diseases; cancers; metabolic diseases; mobility issues, including sports-specific studies; infectious diseases specific to women; mental health conditions and conditions of aging. In addition, as previously mentioned, there are very specific conditions: gynecologic and breast cancers; menstrual cycle disorders; endometriosis and pelvic pain; and management of fertility, preconception, pregnancy, postpartum, menopause and post-menopause.

This is a daunting and entirely incomplete list of conditions that have only been partially addressed through attempts to increase women’s inclusion in clinical trials, cohort studies and female-specific approaches in fundamental science. In addition, the disparities in Canada experienced by rural and remote populations, indigenous peoples and those experiencing poor socio-economic challenges are amplified in the women’s health space.

Instead of bombarding you with more statistics, I'd like to share three specific anecdotes from my experience as a women’s health researcher. My first example draws on my experience where I had the privilege of participating in a bold trial studying the impact of the first licensed HIV drug, AZT, in pregnancy in a placebo-controlled study. The interim analysis came out in February 1994, and we immediately received the data in our clinic showing that the transmission rate of HIV from mother to infant was only 8% in the treatment group compared to 25% in the placebo group. This was the first demonstration that HIV drugs could be used for treatment as prevention. It was an extraordinary moment in medical research, and it was globally pivotal. I returned to Canada in September 1994, and we launched routine antenatal screening for HIV and standard treatment to prevent the transmission of this then-deadly virus. I was forever convinced of the value of pregnancy-specific and women’s health-focused research.

My second example is that of the HPV vaccine and HPV screening towards the elimination of cervical cancer. The discovery of the HPV virus as the near-universal cause of cervical cancer was not only pivotal for women’s health but also brought us to the opportunity to have a vaccine-preventable cancer. Despite major advances in understanding the biology and in how to prevent this disease, it continues to kill relatively young women worldwide—one every two minutes and still more than one death per day in Canada.

Canadian research has, however, contributed to understanding the two key strategies: vaccine programs and HPV screening instead of Pap smears. This is a proven strategy. We've just deployed it in British Columbia and will hopefully move across the country soon. This is a research success story that has driven global strategies from Canadian-based research.

The third example is from our recent pandemic experience. You will recall that, at the beginning of the pandemic, most of the focus—probably appropriately—was on the general population and vulnerable elderly. However, we didn’t know the impacts on women, pregnancy, the fetus and the newborn infant. We were able to pull together many experts across Canada to form a network to study this. Our data showed that pregnant women had a substantially higher rate of hospital and ICU admission and preterm birth rates. This immediately informed clinical care, and when the vaccine became available, Dr. Theresa Tam recommended specifically offering pregnant women the COVID-19 vaccine to prevent these adverse outcomes.

Now our data shows not only that the vaccine is safe but that adverse outcomes are substantially reduced in vaccinated versus unvaccinated women. The key point here is that without Canadian teams ready and able to pivot to study diseases in women and in pregnancy, we would not have even appreciated the substantive differential effects.

Finally, I would like to propose some recommendations to move women’s health research forward in a strategic and focused way. I believe we need to develop a strategic plan for women's health research in Canada. Part of that, in my opinion, is that we need to invest in key scientists who will focus on women's health research, and we can do this by creating more salary awards for scientists and clinician scientists. Ultimately, we need to break down barriers between provinces to share data and understand cofactors.

To conclude, I would like to quote the ambassador for women's health for the U.K., Dame Lesley Regan. "When we get it right for women, everyone in our society benefits."

Thank you.

12:55 p.m.

Liberal

The Chair Liberal Sean Casey

Thank you, Dr. Money.

Last, but not least, representing MS Canada, we have Dr. Valentine.

Welcome. You have the floor.

12:55 p.m.

Dr. Pamela Valentine President and CEO, MS Canada

Good afternoon.

Thank you to the chair and members of the committee for the invitation to speak today on the topic of women's health.

I am a trained neuroscientist and have the distinct honour of serving as the president and CEO of MS Canada. I am here today to share the importance of prioritizing and investing in women's health research specifically for the community I represent, those impacted by multiple sclerosis.

As you probably know, Canada has one of the highest rates in the world, and MS is a disease that differentially affects Canadian women. Women are, as you heard from Dr. Marrie, up to three times more likely to be diagnosed with MS than men. Every day in this country, 12 Canadians are diagnosed with this disease. On average, nine of them will be women. That means that every two hours in this country someone has to hear, "You have MS".

MS Canada is committed to changing the face of MS today and tomorrow. We're making incredible progress towards our impact goals of advancing treatment and care, enhancing well-being, understanding and halting disease progression and ultimately preventing MS.

We have cultivated a network of MS researchers that has become a leading contributor to discovery in the field of MS. The Canadian MS research community is made up of remarkable clinicians and researchers who are contributing to accelerating our research progress in MS, including Dr. Ruth Ann Marrie, who you've already heard from today.

As you heard from Dr. Marrie, there is a pressing need for research focused on women's health issues in MS to address health disparities, knowledge gaps and decisions for MS disease management around family planning, pregnancy and menopause.

I would like to speak for a moment about the emerging area of research that is gaining momentum in the area of prevention. Breakthrough research has shown infection with Epstein-Barr virus as an early trigger required for MS development. This discovery has given us an unprecedented opportunity in preventing MS.

For Julia, a mom living with MS, this research could directly impact her, as she said, "As a parent living with MS, the possibility of my kids developing MS weighs heavily in the back of my mind." It was a question that she and her husband Matt had for my doctors when they decided to try to start a family. "Could our children develop MS? Is it hereditary?"

These recent research advances are changing the way we think about MS. Where MS prevention was once a distant aspiration, today we see prevention as an attainable goal. To reach that goal for moms like Julia, we need to maintain the momentum of these recent discoveries and accelerate research.

At MS Canada, we know the power of collaboration. With the experience and expertise within the MS research community here in Canada and around the globe, working together will lead to transformative progress. Together we will be able to turn our vision of a world free of MS into reality.

With your work here at the committee and as parliamentarians, you can help raise awareness and propose concrete actions, particularly as they relate to MS prevention. This is particularly important when assessing the individual and economic burden of MS.

A recently released Deloitte Access Economics report estimates the annual cost of MS at more than $3.4 billion and rising.

Please allow me to give you an example of this burden.

Amanda, who was diagnosed just 10 years ago, says, "There is no question that living with MS is costly to an individual, but the productivity lost and the health care costs affect our economy as well. As a 36-year-old woman living with MS on long-term disability with increasing health costs, I am one of 90,000 Canadians already costing our system. The toll MS has on our economy is why research for prevention is imperative for our government to invest. More Canadians are being diagnosed every day, and Canada leads the rates of MS globally. We should be taking the lead in partnering globally to answer why MS has become Canada's disease."

The federal government has an important opportunity to invest $15 million in MS research funding in partnership with MS Canada, leveraging our connections and expertise to focus and further our understanding of MS; to pursue leading-edge research on repair and regeneration; and to explore strategies to prevent MS such as identifying risk factors, understanding pre-clinical MS and testing interventions to prevent MS.

With less than 1% of the current federal health research dollars being currently earmarked for MS research, this is simply too little for Canadian women suffering from this life-altering disease, a disease that could arguably be prevented.

In closing, we would like to reiterate the urgency of investing in women's health research, which will benefit all Canadian women, including those who live with MS.

Thank you.

1 p.m.

Liberal

The Chair Liberal Sean Casey

Thank you, Dr. Valentine.

Thanks to all of our witnesses for their opening statements. We're now going to begin with rounds of questions, starting with the Conservatives.

We'll go to Ms. Goodridge for six minutes, please.

1 p.m.

Conservative

Laila Goodridge Conservative Fort McMurray—Cold Lake, AB

Thank you, Mr. Chair.

Thank you to all of our witnesses for being here today.

It's very fitting that we're here in May, the MS month, and have two witnesses to come to speak to us on MS. I've been shocked every time I think about MS and the fact that three quarters of the people who are diagnosed are women.

Dr. Valentine, how many people in Canada have MS, and how many of them are women, in the peer numbers?

1 p.m.

President and CEO, MS Canada

Dr. Pamela Valentine

Currently we can estimate that the number of Canadians living with MS is 90,000. That might be an underestimate, given that there are likely to be individuals in the country who don't get diagnosed. It's often a fairly complicated path to getting diagnosed. As we know, for many people, it takes years.

We also have come to understand that there is a prodrome, or a pre-clinical state and we can see individuals with a distinct health utilization pattern as many as five to 10 years out before the state of diagnosis.

1 p.m.

Conservative

Laila Goodridge Conservative Fort McMurray—Cold Lake, AB

Thank you, I appreciate that.

Dr. Marrie, I was really taken aback by your statements regarding the screening for cancers and the lack of research when it comes to women with MS. I was wondering if you had any recommendations about how we could improve guidelines or research to be able to improve those outcomes.

1 p.m.

Professor, Department of Medicine, Max Rady College of Medicine, University of Manitoba, As an Individual

Dr. Ruth Ann Marrie

From a care standpoint, we need to ensure that the tools or systems we have in place allow people with physical or cognitive impairments, or who live remotely, to access things like mammograms and Pap smears. We need to ensure that every community has access to mammogram tables that are adjustable for people who need to be in wheelchairs, and that there are lifts and people to do that. That's an inventory that could be done within health authorities across the country. There shouldn't be disparities because you have those impairments.

From a research perspective, our challenges have been that, like much research done in Canada and around the world, the people we end up including in studies are those who are best educated, most affluent, able to miss time from work and those kinds of things. We need to be able to fund studies that are more complex so that we can reach out to people in their first languages rather than the languages they acquire when they come to Canada, so that we can have study sites that are remote from academic centres that still allow us to collect information and address the barriers of underserved populations, so that we can figure out how to address their needs from a health care perspective. That really requires a concerted effort across all levels of funding.

May 2nd, 2024 / 1:05 p.m.

Conservative

Laila Goodridge Conservative Fort McMurray—Cold Lake, AB

Thank you.

As a rural and remote member of Parliament, that's something that definitely does speak to me. That's an incredibly important piece.

Dr. Money, you also touched on “rural and remote”. You talked about the HPV screening that is being done in British Columbia. I don't have much time left, but I was wondering if you could expand on what's being done in B.C., what you would recommend to women and what you would recommend to other governments when looking at HPV, specifically.

1:05 p.m.

Professor and Head, Department of Obstetrics and Gynaecology, University of British Columbia, As an Individual

Dr. Deborah Money

We have really good data that shows that primary testing for the virus that causes cervical cancer, the HPV screen, is actually better than the Pap smear, as much as we were very proud of that from before. In the way we've deployed it, it's actually a self-swab that is very simple for women to do. They can do it in their home. They can mail it in to the central laboratory. It really does reduce those barriers.

If there's a fear of having these kinds of examinations, a history of trauma, if they're very remote—any of those barriers that have made it difficult for women to get in for Pap smears—we are confident that this will reduce those. We'd love to see it rolled out across the country.

1:05 p.m.

Conservative

Laila Goodridge Conservative Fort McMurray—Cold Lake, AB

How complicated is the self-screening for HPV?

1:05 p.m.

Professor and Head, Department of Obstetrics and Gynaecology, University of British Columbia, As an Individual

Dr. Deborah Money

It's actually really very simple. It's a simple vaginal swab, and almost all of the labs across the country are capable of doing the HPV screen panel. We're looking specifically for types of viruses that are known to be cancer-causing. It triggers an algorithm for those who are negative, and they can go for a five-year gap. Those who are positive need more additional attention. We're then focusing on the people most at risk of cancer.

1:05 p.m.

Conservative

Laila Goodridge Conservative Fort McMurray—Cold Lake, AB

That's really interesting. You were talking about your early research into HIV drugs and pregnancy. I'm finding, in some of those links that we've heard about many times in this committee, that there's a disparity when it comes to research for that period of time. I was wondering if you have any suggestions as to how we could improve access to women's health research funding, specifically for women in those stages of life.

1:05 p.m.

Professor and Head, Department of Obstetrics and Gynaecology, University of British Columbia, As an Individual

Dr. Deborah Money

I think it's really about how research funding is allocated and prioritized. We certainly see that pregnancy is often the stage of life where women are excluded from clinical trials. The reason I called this a bold trial is it was incredibly groundbreaking to have the guts to try an early-stage drug. However, it was because of the high rate of infection in the infants and the death rate associated with that. It forced a really bold and advanced move. Unfortunately we haven't seen that follow-up. New medicine, new vaccines over and over again...we're not seeing the trials in pregnancy early enough to understand safety.

1:05 p.m.

Conservative

Laila Goodridge Conservative Fort McMurray—Cold Lake, AB

Chair, I know my time has lapsed, but I have one quick question.

What would you recommend to young girls who are looking at getting an HPV vaccine?

1:05 p.m.

Professor and Head, Department of Obstetrics and Gynaecology, University of British Columbia, As an Individual

Dr. Deborah Money

I would say please do it, because it can prevent cancer.

1:05 p.m.

Conservative

Laila Goodridge Conservative Fort McMurray—Cold Lake, AB

Thank you.

1:05 p.m.

Liberal

The Chair Liberal Sean Casey

We have Ms. Sidhu, please, for six minutes.