Health Committee on Nov. 29th, 2023

[The Chair, Liberal, Sean Casey]

Welcome to meeting number 92 of the House of Commons Standing Committee on Health.

Today's meeting is taking place in a hybrid format pursuant to the Standing Orders.

For those who are participating remotely, be sure to click on the microphone icon to activate your microphone, and mute yourself when you're not speaking.

Regarding interpretation, for those of you on Zoom, you have the choice at the bottom of your screen of either the floor, English or French. I will remind you that screenshots or taking photos of your screen are not permitted.

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.

Appearing as individuals, we have Dr. Elaine Jolly, professor emeritus, Department of Obstetrics and Gynecology at the University of Ottawa, and Dr. Fiona Mattatall, obstetrician-gynecologist, appearing by video conference. Representing EndoAct Canada, we have Dr. Catherine Allaire, co-chair, who is on the screen, and Kate Wahl, executive director, also on the screen. Representing the McGill University Health Centre, Endometriosis—Centre for the Advancement of Research and Surgery, we have Dr. Don Bach Nguyen and Dr. Andrew Zakhari.

Thank you to all of you for taking the time to appear today. We look forward to hearing what you have to say. We're going to begin with opening statements of five minutes each, starting with Dr. Jolly.

Welcome to the committee. You have the floor.

[Dr. Elaine Jolly, Professor Emeritus, Department of Obstetrics and Gynecology, University of Ottawa, As an Individual]

Good evening, Mr. Chairman, committee members and fellow witnesses. I am honoured to have this opportunity to present to the standing committee on women's health.

Endometriosis is a condition that I have been advocating for throughout my 50-year career in medicine, first, as an obstetrician and gynecologist, then as a reproductive endocrinologist and as the founder of the Shirley E. Greenberg Women's Health Centre at the Ottawa Hospital. Although treatment options for endometriosis have advanced for women in Canada, progress on research, early diagnosis and surgical treatment has been slow in comparison to other countries.

I began my medical practice as a gynecologist and established the Ottawa infertility program. Later, I started a pediatric and adolescent gynecology service at the Children's Hospital of Eastern Ontario. I saw first-hand frightened young adolescents living with menstrual disturbances and chronic pelvic pain—yes, even at this early age.

In my infertility practice, I saw the heartbreak of women unable to conceive, as 40% of these fertility patients suffer from endometriosis. This chronic condition, if left untreated, often plagues women throughout their reproductive lives, even up to and beyond menopause.

In my menopause program, which I founded at the women's health centre in Ottawa, there were significant numbers of patients with premature menopause due to early ablative surgery. Providing these young women with hormone replacement for quality of life is extremely difficult since endometriosis may be restimulated by hormones. If they cannot take hormone replacement there is an increased risk of cardiovascular disease, stroke, osteoporosis and even premature death.

In the early 1970s, laparoscopy and imaging by pelvic ultrasound assisted in the diagnosis of endometriosis. By the eighties we had the first minimal invasive surgery treatment by laparoscopy. In the nineties, fellowships in minimal invasive surgery were offered at teaching hospitals in Canada and in many places around the world. Furthermore, in Ottawa, we did not get supreme imaging that was enhanced by MRI until the 2000s. Sadly, today, advanced diagnostic imaging is not equally accessible throughout Canada. There are only a few centres of excellence in major urban centres. Persons living in remote communities and ethnic minorities are under-serviced. I have had patients visit my Ottawa clinic from northern Ontario, Quebec, the Maritimes and Nunavut.

In departments of OB-GYN across Canada, funding for gynecology is a problem. Funding is prioritized to obstetrics, leaving gynecological problems struggling to have clinics and OR time. The development of sub-specialized programs, such as minimally invasive surgery and chronic pelvic pain, remain unfunded. This bias needs to be addressed nationally and ASAP.

First and foremost, I wish to acknowledge and fully support the excellent and timely submission of “Endometriosis in Canada” and its recommendations.

I also suggest the following 10 actions be taken to support women with endometriosis in Canada:

One, establish a national education program for all women, with government funding of lay organizations to promote awareness and to start a standardized high school curriculum on menstrual disorders. This should be a national outlet.

Two, expand the gynecology curriculum across all medical schools and teaching hospitals to include endometriosis, with an updated and standardized curriculum for undergraduates and post-graduates.

Three, have continuing medical education and support for health care providers.

Four, give financial support for endometriosis centres of excellence with a multidisciplinary approach.

Five, the recognition and support of allied health practitioners.

Six, investments in innovation and research for advanced diagnostics.

Seven, amend the immigration policy to fast-track qualified foreign medical graduates, prioritizing those with advanced medical skills.

Eight, increase funding for women's health research on endometriosis.

Nine, propose national guidelines on endometriosis, written by experts, with expanded Canadian health data.

Finally, 10, develop a national action plan on endometriosis diagnosis and management, which is done in a few countries. We must catch up.

In conclusion, now is the time to study endometriosis fully and to make policy decisions that will advance the prevention, care and treatment of women facing this chronic condition. All women have the right to live full, productive lives that are pain-free.

Thank you for your attention.

[The Chair, Liberal, Sean Casey]

Thank you, Dr. Jolly.

Next, we're going to hear from Dr. Fiona Mattatall.

You have the floor, Dr. Mattatall.

[Dr. Fiona Mattatall, Obstetrician-Gynecologist, As an Individual]

Thank you, chair and members, for this opportunity to speak.

I'm Dr. Fiona Mattatall, and I've worked for two decades as an obstetrician-gynecologist in Calgary, Alberta. As such, I am a specialist in both the medical and the surgical care of the organ system that includes the vulva, vagina, uterus and ovaries. I am one of your frontline workers in women's health, but this also extends to the care of gender-diverse Canadians. I am a clinician, but also an educator and an assistant professor at the University of Calgary.

It is refreshing to see the standing committee address women's health and specifically not focus solely on pregnancy. All too often, women's health is reduced to maternal health only. An example from here in Alberta is that our strategic clinical networks focus on maternal health, and there is no place for advocacy for non-pregnant women's health issues, such as contraception, heavy periods, pelvic pain, menopause or pelvic organ prolapse.

Although it was reassuring in Monday's meeting to learn about the recent work and funding through the sexual and reproductive health fund, we see a lack of prioritization of sexual and reproductive health across the country. Again, here in Alberta, the surgical metrics that we see tracked are cataracts, knee replacements and hip replacements. We see no tracking on things such as wait times for hysterectomies or any other gynecological procedures.

Every day in my clinic, I witness Canadians who cannot fully participate in life or work due to gynecologic issues. Patients are affected by the lack of health prevention, the lack of health awareness and delayed diagnosis. Many times, I feel that my hands are tied, as patients cannot afford medical options or they sit on my surgical wait-list for over a year.

I am sure you will hear specifics from experts tonight with regard to endometriosis, but this also extends to heavy periods, menopause and, again, pelvic organ prolapse. This is further exacerbated by the difficulty accessing evidence-based holistic care for these conditions, such as pelvic floor physiotherapy.

I am sure that your committee is aware of the historic and current issues of gender inequality in medicine. Pelvic pain has long been dismissed, and I am one of those physicians who has been on both sides of the diagnosis.

Endometriosis, as a disease, has for too long been neglected as a priority in research and in treatment. While this has improved slightly in recent years, there remains a significant and unaddressed gap when it comes to other areas of medicine. As you will hear today, endometriosis is a complex disease for which treatments are focused on medication and surgery, but there is also a longer-term chronic pain aspect that requires multidisciplinary teams, and many aspects of these are poorly supported in Canada.

Specific to gender inequity and surgery in our own country, you might be interested to find out that reimbursement for surgeries on Canadian women pays 26% less than that for the equivalent surgeries on Canadian men. The study that cites this data is attached to my notes. That gynecology is the only majority female surgical specialty is a double hit of gender inequity to both the patient and the physician.

I have three suggestions for the standing committee this evening. Number one is to include key performance indicators for women's health in all system evaluations. Number two is to require provincial health organizations to apply a gender lens to health care resource allocation. Number three is to support the passage of a national drug plan, and specifically include contraception and medications that treat pelvic pain and heavy periods.

Thank you.

[The Chair, Liberal, Sean Casey]

Thank you, Dr. Mattatall.

Next, from EndoAct Canada, are Dr. Catherine Allaire and Kate Wahl.

I understand that you have a joint statement. Between the two of you, you have five minutes. You have the floor. Welcome.

[Dr. Catherine Allaire, Co-Chair, EndoAct Canada]

Thank you, Mr. Chair and members of the committee for the opportunity to provide evidence today about endometriosis for the women’s health study. We are grateful to the committee for prioritizing this issue.

I am Dr. Catherine Allaire. I'm a gynecologic surgeon. I'm also head of the UBC division of gynecologic specialties and medical director the B.C. women's centre for pelvic pain and endometriosis, an interdisciplinary centre we have in Vancouver for endometriosis care. I'm also co-lead of EndoAct Canada, an organization created to drive action on endometriosis in Canada, which was co-founded by the Endometriosis Network Canada and is a patient group, and the Canadian Society for the Advancement of Gynecologic Excellence, which is a physician group.

I am joined today by my colleague Kate Wahl, a Ph.D. candidate at the University of British Columbia and executive director of EndoAct. We look forward to sharing and clarifying our points of view and hope that the committee will also have the opportunity to hear directly from people living with endometriosis.

Endometriosis is a complex, chronic disease that affects at least one in 10 women of reproductive age and an unmeasured number of transgender, non-binary and two-spirit people. That’s approximately two million Canadians. The disease occurs when tissue that is similar to the lining of the uterus forms lesions, cysts and deep nodules on other parts of the body, including the ovaries, bowel and bladder. Symptoms of endometriosis often begin in adolescence and include severely painful periods, chronic pain and infertility. There is currently no cure for endometriosis, and the disease is managed through expert surgery, medications and complementary care.

Historically and to this day, endometriosis symptoms have been dismissed as just part of being a woman or a bad period. This is rooted in the widespread normalization of women’s pain and neglect of conditions that affect women and leads to delays in diagnosis and treatment as well as adverse outcomes. For example, teens with symptoms of endometriosis are 10 times more likely to miss school, impairing their ability to obtain their educational goals. Adults with unmanaged endometriosis are less able to participate in their work, community and family.

Beyond the physical impact of the disease, people with endometriosis also experience higher rates of mental health conditions. Endometriosis is not just a women's health issue; it is a societal issue. In fact, the cost of endometriosis to the Canadian economy has been quantified as $2.5 billion annually, primarily due to lost productivity.

Despite its high prevalence and the burden of endometriosis on Canadians, access to care remains poor. People wait an average of at least five and as long as 20 years to receive a diagnosis. This delay is attributed to poor public awareness of the disease and low knowledge among health care providers. Once people do receive a diagnosis, our recent informal survey of surgical experts across Canada found that patients are waiting six to 18 months to see an appropriate specialist and a further six to 24 months for surgical management. That’s a wait of up to three and a half years.

The reasons for this delay include an insufficient number of properly trained surgeons and inadequate remuneration for this type work, but, most importantly, lack of adequate OR access for those surgeons who choose to do this work. There is a consistent and concerning discrepancy in wait times for non-cancerous gynecologic conditions when compared to other non-cancerous surgical specialties. This is gender-based discrimination.

[Kate Wahl, Executive Director, EndoAct Canada]

The shocking consequence of these delays is that more and more Canadians are paying out of pocket to access the endometriosis care they need outside of the country. To be clear, these are not experimental or unnecessary procedures; they are standard and life-changing surgeries. It is also not just wealthy Canadians who are seeking care internationally. We have spoken to people who have drained their savings or taken out second mortgages to make treatment possible.

Fortunately, there are opportunities to make real change in the lives of women and gender-diverse Canadians with endometriosis. Looking internationally, our peer nations like Australia, France and the United Kingdom have all identified endometriosis as a pressing women’s health issue and developed policies to tackle the disease. The common theme of these policies is investment in three areas: first, improving timely access to appropriate care; second, enhancing knowledge of the disease among health care providers and the public; and, third, investing in research to identify the cause and cure of endometriosis.

We strongly urge the committee to consider how Canada can join our peer nations in taking coordinated and strategic action on endometriosis. In our view, the first and critical step would be to consult with Canadians who have endometriosis as well as clinicians and researchers to better understand the contributors to the current challenges and create a national action plan on endometriosis to address this problem. Together, we can make real change on this pressing health issue.

Thank you.

[The Chair, Liberal, Sean Casey]

Thank you, both.

Last but not least, we have the McGill University Health Centre.

Dr. Nguyen and Dr. Zakhari, you have the floor. Welcome.

[Dr. Andrew Zakhari, Co-Director, Endometriosis Centre for the Advancement of Research and Surgery, McGill University Health Centre]

Thank you very much to the House of Commons for extending an invitation to Dr. Nguyen and myself.

We are gynecologic surgeons specializing in endometriosis, and we are the co-directors of EndoCARES, which is a specialty clinic for advanced endometriosis surgery and research.

We'd also like to thank our fellow witnesses for their powerful statements today.

I'll let Dr. Nguyen take it from here.

[Dr. Dong Bach Nguyen, Co-Director, Endometriosis Centre for the Advancement of Research and Surgery, McGill University Health Centre]

Thank you, Mr. Chair and members of the House of Commons.

All of us here know someone affected by endometriosis, whether we realize it or not. That's because even though it affects one in 10 women and countless gender-diverse individuals, it often leaves people silently suffering with debilitating pain and absenteeism from work or school.

Imagine having plans of building a family but not being able to conceive because of endometriosis, or losing a kidney because of endometriosis, or having a blockage of the intestines.

When you consider that over one million people in Canada have endometriosis—which may take years to diagnose—this represents a huge economic burden on the health care system and on our society. It's estimated to be over $2 billion per year.

[Dr. Andrew Zakhari]

When it comes to endometriosis in Canada, we are fortunate in many ways. We do have experts in endometriosis from coast to coast. We have 14 fellowship programs for gynecologists to subspecialize in complex pelvic surgery. We have a national body, known as CanSAGE, that oversees these training programs and that organizes boot camps and workshops, as well as conferences, in gynecology. We're also fortunate to have organizations committed to spreading awareness and to fundraising, such as EndoAct Canada and the Endometriosis Network Canada.

[Dr. Dong Bach Nguyen]

Many countries around the world—such as France, Australia and Denmark—have set national action plans for endometriosis care. While in Canada we have expertise in endometriosis, what is missing is a comprehensive action plan to allocate funds and resources to centres with endometriosis expertise. We believe that empowering these centres is the most effective way to address wait times for diagnosis and treatment.

There are three main domains in which support is needed.

First, there is an urgent need to improve access to surgery. Surgery is essential for many patients, whether to relieve symptoms, improve fertility or reverse damage to organs. What is missing is not surgical expertise but rather adequate operating room time to address growing wait times.

In our centre alone, there are nearly 1,000 patients awaiting surgery in the department of gynecology. This means that patients who are referred to us wait six months to be seen, followed by an additional one year of waiting if they need surgery. This backlog is frustrating for patients and providers, and it's disheartening, obviously, for patients living with terrible symptoms.

[Dr. Andrew Zakhari]

Besides improving access to surgery, the second key domain is supporting multidisciplinary care teams, as we've heard tonight.

Endometriosis can negatively impact so many aspects of life besides causing pelvic pain. It can affect sexual function. It can affect urinary and bowel function, reproductive health and mental health. A multidisciplinary team is, therefore, essential for endometriosis care. We should be emulating successful clinical models, as we've seen with cancer care, diabetes or orthopaedics.

Endometriosis is a complex and chronic condition no less deserving of such a model of care. For endometriosis, such teams would include nurse navigators, pelvic physiotherapists, nutritionists and psychologists. They would all be part of the team. Until we ensure adequate public funding for all these services, proper endometriosis care will remain accessible only to those able to pay in the private system and will remain fragmented for the rest of the population.

Finally, as we've also heard here tonight, endometriosis research is underfunded, particularly when compared to other chronic conditions. I'll put this in context: In 2022, there were approximately $4 per patient per year allocated to endometriosis research compared to $31 for diabetes or $130 for Crohn's disease, which affects less than 1% of the population. While we are encouraged by the recent announcements of federal support for endometriosis through the Endometriosis Network Canada and the Society of Obstetricians and Gynaecologists of Canada, more funding allocated to research in endometriosis and women's health will help drive innovation and discovery in this field, and hopefully open up new diagnostic tests and treatment options.

To summarize, we need resources to follow the patients who are seeking care in centres with expertise in endometriosis, specifically improved access to surgery, public funding for all the allied health care workers needed for high-quality endometriosis care, and more research funding focused on endometriosis and women's health. While taking these steps will not solve the challenge of endometriosis care, it will certainly go a long way to bridge the divide between where we are today and where we should be in Canada.

Once again, we'd like to thank the House of Commons for the invitation to appear here today to advocate on behalf of our patients.

[The Chair, Liberal, Sean Casey]

Thank you very much.

We're now going to begin rounds of questions, beginning with the Conservatives.

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

[Karen Vecchio, Conservative, Elgin—Middlesex—London, ON]

Thank you so much, Chair.

I would really like to thank all of the witnesses who are here today. You've really brought your expertise. I really appreciate all of the knowledge you have.

I want to read just a quick quote for you. I think that after speaking to you we can see that there's absolutely some disconnect here, because we could do more.

As noted in Policy Options:

Canada is known by advocates around the globe for having some of the worst endometriosis care in the developed world, a situation made worse by gatekeeping at the family medicine and generalist OBGYN levels, a stubborn lack of expertise on how to treat this complex illness, and some of the longest specialist wait times on record.

I think you've touched on many of these things.

I'll start off with you, Dr. Jolly.

Thank you. For 50 years of working on this, you deserve a massive pat on the back from every woman who has ever gone through this. Thank you so much.

I heard from McGill, though—and I want to switch around to all of you—that one in 10 women, from what I understand, has endometriosis. When do the first signs start to appear? Is it at the time of the first menstruation that they would be finding that something might be bad?

I'll move into these questions.

Elaine, can you share that with me? When does endometriosis start? When would people start thinking that there's something different with their period or that it's abnormal?

[Dr. Elaine Jolly]

Well, definitely, it can start in adolescence, so we need these young women to be aware of what the signs and symptoms are.

Number one, it is pain: pelvic pain, pain with your periods, pain if they are having intercourse and pain with regard to bowel function and to ovulation. It can also be associated with heavy bleeding and irregular bleeding.

If we can get this early—and treat it early and think about it early—the gatekeeper is the family physician. Many family physicians don't have time and they normalize this: “Oh, this is just what happens to girls, so suck it up, buttercup.”

You need to listen, because the family doctor or somebody in emergency may have said that you can take NSAIDs and that would help. Sometimes it helps a bit, but it doesn't help that much. If in three months you're taking your initial NSAIDs along with even more serious pain medication, then the physician should think about it. Could this be endometriosis? Should they examine this patient, which they often don't do? Might that patient need diagnostic imaging like ultrasound?

It can also be asymptomatic, which is difficult. When you see this young woman—not the same one, another one—in your infertility practice and you do all of the workup for her and then do maybe a diagnostic laparoscopy, and oh my goodness, you see that she has a pelvis that may not be full of endometriosis but may be at the beginning of endometriosis.

It is pain: pain, pelvic pain, which eventually turns into chronic pelvic pain, but that can take quite a while depending on the serious nature—

[Karen Vecchio, Conservative, Elgin—Middlesex—London, ON]

There was something that EndoAct Canada said, that Catherine had mentioned here, which was that it was seen as “a bad period”. That is so subjective: What is a bad period?

Is there something when it comes to a length of a period so that if a young woman.... I've done some research that they may have a shorter time span. Five days are what you regularly would be menstruating for; they talk about it being shorter. As you indicated, they may go into menopause earlier as well. Can you share a bit about that?

I'll pull over to you. I'm looking at the six months to be seen, followed by the one year for surgery. If you're 12 years old or 13 years old and getting your first period, you have no idea how to compare this. You're comparing apples to oranges, because nobody's period is the same. When is it going to be the first time that one of these young women actually starts seeing an OB-GYN because this has actually been referred further?

I know that's a lot to pile on. Please, anyone take charge, but Elaine, if you could start with that, I'd really appreciate it.

Then we'll go over to EndoAct, and then back to McGill, if you don't mind.

[Dr. Elaine Jolly]

It doesn't usually start right away unless there's obstruction to the pelvis. Sometimes that happens, and it's a congenital issue, so that as soon as you have a period, you start to have pain. This is something that builds up slowly. The pain initially may be minor. Of course, this is normal; this is just what happens to girls. However, when it becomes so serious that they have to miss school, they see the school nurse.

Periods last five to seven days. If you are bleeding for 10 days or 11 days and you're having pain for all of that time, then you know there is something wrong.

You need to take a good history. You need to take a gynecological history, and for this you need time. You need to have some idea about endometriosis: pain, heavy bleeding—

[Karen Vecchio, Conservative, Elgin—Middlesex—London, ON]

And more pain....

[Dr. Elaine Jolly]

—and more pain.

[Karen Vecchio, Conservative, Elgin—Middlesex—London, ON]

I want to pass it over to EndoAct, because I had the opportunity to meet with EndoAct as well as young women who came and shared with me their experiences. Can you provide some insight on this as well?

[Dr. Catherine Allaire]

I'd be happy to. I think your points are very well taken, and certainly the teenager who has abnormal periods may not know they're abnormal. There is certainly a difficulty with sharing that information. Sometimes there is still a certain mystery and certain taboo about discussing menstruation. That's problematic, and that's one of the points that has to be addressed in understanding what a normal period is and what an abnormal period is.

I would take Dr. Jolly's point, which is that when the period is interfering with the person's quality of life and they are unable to function during the time of menstruation, that's a problem. To me, that's the simplest way to put it. If they're unable to function and having to plan their life around their periods and are missing school, work, etc., then that's a red flag, essentially.

That's what I'd say about that.

[The Chair, Liberal, Sean Casey]

Thank you, Dr. Allaire and Ms. Vecchio.

Next is Dr. Bennett, please, for six minutes.

[Carolyn Bennett, Liberal, Toronto—St. Paul's, ON]

Thank you all very much. It seems everybody wants a national action plan, and I know that the September funding was mainly about access, but how would you see some of that money going to actually map out what's there and not there? From what I'm hearing from Dr. Jolly, I think if young women knew about it.... As a humble family doctor, I had lots of patients come in and say, “Do you think it could be endometriosis?”

If you build that health literacy, sometimes it shortens how long it takes to get the imaging or all of that. My question is on what would be in an action plan.

Also, in the specialized imaging, it sounds like it's only going to be in certain places across the country. Is there a way that could happen virtually with technicians in various places, but the actual imaging happening in the specialized sites? In the referral system, again, how do we make sure it's equitable across the country, without people having to get on a plane? Is it just that it's not on the billing schedule, or is it that there are wait times and people then choose to go private or go to the States?

Anybody can have a go at any of it.

[Dr. Catherine Allaire]

I'll speak to the national action plan, because that's certainly something EndoAct has put forward as something that can be emulated following the example that Australia has set for us. They have been very successful so far with their plan at obtaining funding. The three arms are always awareness education, access to quality care or for evidence-based care, and research funding.

The funding that was released in September was targeted to awareness, so that's the first part of what we're hoping for. It was targeted toward increased awareness among the patients and the population of Canada, as well as some educational initiatives for physicians and gynecologists by SOGC. That part seems to be a beginning. It certainly may not be enough money, but it's certainly a start.

I do believe that a national plan requires consultation, and a bit more identification and study of the actual barriers. We think we know the barriers, but we need to be more scientific about understanding really where the barriers are so we can address them in a more fulsome way.