Health Committee on Nov. 29th, 2023

[Dr. Elaine Jolly]

If I may, having read the two action plans—the one in Australia and New Zealand and the one in the U.K., which goes up to Scotland—I would say they are amazing, so we certainly would consult. As a matter of fact, I think that a visit to one of these places would be ideal.

In Canada we need to know what is happening and we need, before we have the action plan, to have our own guidelines. This was the start they took, and actually they called them “nice” guidelines because of what is in the parentheses. In similar situations, we would look at the major parameters and come up with guidelines for Canada, and then have this national action plan. So it would be a series of funds.

What struck me is the similarity. They have both have had very successful integration of endometriosis information in the schools, so there is a pattern and there is information that is shared, but it is specific. In Wales, in Ireland, in Scotland and in the basic U.K, in all of the schools they have put this in and the funding has been from Parliament. As a matter of fact, when you look at this, it's a parliamentary report. It's not quite the same in Australia.

We have differences. We have a big country. They have a small country. We have to go from sea to sea and we have to look at centres of excellence to lead some of this, and there needs to be a coming together of experts in endometriosis and all of the areas we have represented here so they can come up with a really good document.

This isn't going to happen overnight. Would you say this is going to take a little while?

[Dr. Andrew Zakhari]

Absolutely.

At this time I'd like to add that part of the national plan should address what we're already doing well, because we keep saying that we have problems, but we also have success stories.

We heard a quote tonight about it being some of the worst care in the world, but I would argue that we also provide some of the best care in the world, so I think we're on both ends of the spectrum. That's what we need to mediate with a national action plan to identify our strengths and the gaps in care, and to build systems to make sure every patient has access to the good story and not the bad story.

[Dr. Elaine Jolly]

We need education, though, for the primary care physicians and the patients. They need to fit into this, and the education comes from the wonderful supports we have here in Canada.

I would say that we don't have bad care. We don't have enough physicians. We don't have enough health care workers. We can't even put this action plan into place until we have some support.

Just to give you an example, we have a women's health centre in Ottawa that was supported by a very wonderful woman who gave a lot of money. That was matched by the hospital and by the province, but this needs to be carried on. You must have a priority in your department, because you can get the start, but then you must produce. The production is part of the national action plan, because we know what is good, but we don't have enough centres of excellence. We have some—14—and just now we need some in every province so that people don't have to travel miles and don't have to do medical tourism.

I'll say just one thing about imaging. Pelvic imaging has to be done with a diagnostic pelvic ultrasound, so you can't do that virtually. You have technicians and the technicians learn old endometriosis information because they have not been brought up to date. In some cases, yes, they have wonderful imaging.

In Ottawa, my colleague, Dr. Sony Singh, just recruited a physician from—

[The Chair, Liberal, Sean Casey]

Dr. Jolly, thank you. We're well past time.

There are a whole bunch of other people who want to ask some questions here too.

[Dr. Elaine Jolly]

—Kuwait, who has diagnostic imaging expertise that no one else we could recruit here from Canada has, so we need to look at all of this as well.

[The Chair, Liberal, Sean Casey]

Ms. Larouche, you have the floor for six minutes.

[Andréanne Larouche, Bloc, Shefford, QC]

Thank you very much, Mr. Chair.

I want to thank all the witnesses for being here today and for taking close to two hours to talk about endometriosis.

We know that the stigma surrounding women's illnesses is still very widespread in our communities.

I have a number of questions and I know we will have a few rounds to ask them.

I will begin with you, Dr. Jolly.

You were on a roll regarding the recognition of credentials.

What needs to be done in this regard, knowing that some aspects are under government control and that some professional bodies might have reservations at times?

Who has to come back to the table? What discussions are needed to facilitate the recognition of credentials?

You raised the issue of staffing, which is crucial in our health care system.

[Dr. Elaine Jolly]

I have to give that answer to someone else. I didn't turn on my French button, so I didn't understand exactly what—

[Andréanne Larouche, Bloc, Shefford, QC]

Perhaps someone else would like to answer.

[The Chair, Liberal, Sean Casey]

If you could turn on—

[Dr. Catherine Allaire]

I would be pleased to answer in French if you wish.

Let me get back to your question, which is similar to what someone else asked about access to care. Access to surgeons was mentioned, among other things.

Many surgeons have received excellent training in Canada. Fourteen research grants have been awarded in laparoscopy and endometriosis, but the surgeons end up working in the communities and no longer have operating time.

One of my colleagues who studied with me and works in a city in Alberta was given one day of operating time per month. She has a two-year waiting list, but does not get enough operating time. That is the first problem.

Not much can be done by well-qualified people who are not given operating time. The first step is to give them the necessary access. Once they have sufficient access, we have to look at staffing issues and the recognition of credentials.

We have to consider people from other countries who have the necessary degrees, while ensuring that their training is equivalent to what we offer in Canada. Due diligence has to be shown and we have to check their credentials to ensure that their skills meet our standards.

[Andréanne Larouche, Bloc, Shefford, QC]

Dr. Allaire, I would like to continue with you.

In your presentation, you mentioned salaries for health care professionals and doctors. You also talked about access to operating rooms, in particular.

The Standing Committee on the Status of Women conducted a study on the disproportionate effects of the pandemic on women. We also suspect that the pandemic had an impact on health care and resulted in delays.

Organizations such as the Canadian Cancer Society have indicated that there were delays in obtaining certain diagnoses.

I would like to hear your thoughts on the pandemic's impact on treatment delays, recognizing that we should have invested more in Canada's health care system, and that has been the case for a very long time.

The pandemic simply highlighted the cuts that were made over time, in the name of austerity, to our health care system and to health transfers.

What link has to be made between the pandemic and the emphasis the government must place on adequately funding the health care network, in spite of periods of austerity and the pandemic's impact?

This is the time to send the public the clear message that massive reinvestment in our health care system is needed in order to increase staffing.

It is not simply a question of recognizing credentials; we must also offer good salaries to attract and retain health care workers. Greater access to operating time is needed.

Can you make a connection between the pandemic and the issue of investing in our health care system?

My question is a bit long, but I would like some information nonetheless.

[Dr. Catherine Allaire]

Everyone knows that the pandemic was devastating to the medical system. All non-urgent cases were set aside during the pandemic. Only cases of cancer and trauma were treated. This created major problems in health care, and we are struggling to get back to normal. We are trying to catch up, but are not there yet.

This highlighted the weaknesses of our system, which was already stretched to 110%. So when the pandemic hit, we were unable to absorb the additional pressure on us. We have all seen the effects of that.

Certain things can be done, however. Some centres in Canada have invested in women's health, including ours. I have to say that we are very lucky in Vancouver because B.C.'s women's hospital recognized the importance of women's surgery. It created a surgical program specifically for women and their illnesses. It made available a number of operating rooms for day surgeries and minimally invasive procedures that did not require major surgery. So we can do our major procedures at the hospital where they should be done, and minor procedures elsewhere.

Such models exist, but it takes motivation and money to develop them. We were lucky that our hospital and the B.C. government recognized the importance of this.

[The Chair, Liberal, Sean Casey]

That's all the time we have, Ms. Larouche.

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

[Lindsay Mathyssen, NDP, London—Fanshawe, ON]

Thank you to all of the witnesses for joining us this evening.

This will be for Dr. Allaire and Ms. Wahl from EndoAct, first of all.

In the submission to this committee, you note, “Federally, endometriosis is not included in the Canadian Chronic Disease Surveillance System, and the Canadian Institutes of Health Research...have not invested in endometriosis as a priority area.”

You also stated—and I think all of the witnesses commented on this—the high number of women who suffer from endometriosis. It's one in 10 women, and the research is not even done on those who are transgender, non-binary and two-spirit.

Why is endometriosis not included in the Canadian chronic disease surveillance system and why hasn't it been a priority for that federal funding?

[Kate Wahl]

I think that's an excellent question.

On the research front, it's probably a multi-faceted problem. On the one hand, to make real changes in endometriosis we need to see sustained investment in research areas. Certainly, the Canadian Institutes of Health Research have been investing more in women's health research more recently, which is really wonderful to see. I think to catch up on this issue, continued ongoing investment in areas that are prioritized, particularly by the patient community, would be important for change.

There's also a little bit of a researcher pipeline problem in the sense that when there's unawareness of a disease, you're not necessarily bringing people into that field to investigate the issue.

It's at once about how our research funders can invest in the problem, thereby contributing to solutions, and also about bringing folks into the field who might not have been there before.

On the chronic disease surveillance front, I think that's a question we would almost have for the committee. It's very difficult for us to understand how those priority areas are set, given how common endometriosis is among Canadians and the burden that it has over the course of a lifetime. We're talking about a disease that can start when you're 12 or 13 and continue to menopause and beyond.

Certainly, understanding how to make changes in that area would be important. We say that if you can't measure it, you can't fix it. Having a better sense of what the burden is and how it's changing over time would be really important for making change.

[Lindsay Mathyssen, NDP, London—Fanshawe, ON]

That CIHR funding is tri-council funding. I mean, that's directly from the federal government.

I've certainly heard that from a number of grad students. Those who rely upon that funding in my home town at Western University and the Schulich School of Medicine have commented on that directly. It's incumbent upon the federal government to increase that as well within that tri-council funding.

Would you agree with that?

[Kate Wahl]

Yes, I think that's fair.

[Lindsay Mathyssen, NDP, London—Fanshawe, ON]

Also, EndoAct in Canada called on the federal government to ensure there are provisions for endometriosis in transfer funding agreements, particularly to enable improvements in access to expert surgical and multidisciplinary care.

To your knowledge, has the federal government raised such provisions in its ongoing negotiations to finalize bilateral health-funding agreements with the provinces and territories?

[Kate Wahl]

I'm not aware that has happened. That's one of the points we made in our brief, which was attached.

Until we consider endometriosis benchmarking as a priority similar to what we've done for other things like hip replacements, etc.... Those have been set as priority areas. It is high time endometriosis surgery is set as a priority area with associated benchmarks, and with expectations for provinces to fulfill those benchmarks.

[Lindsay Mathyssen, NDP, London—Fanshawe, ON]

My colleague Don Davies introduced a motion, M-52, which tries to establish a national action plan for endometriosis. New Democrats certainly support that. One of the key points of a national action plan, of course, is the universality of care, which ultimately falls within the Canada Health Act.

Would everyone agree with that, as well?

Perhaps I can hear from Dr. Jolly.

[Dr. Elaine Jolly]

New Zealand, Australia, U.K. and now France—which just announced it is going to do this—have universal funding. Therefore, they can, from the federal position, support what is asked for or what is pointed out as vital to decrease the gap. In the U.K. and Australia, it takes eight years to be seen. We're much better than that. We're at 5.4 years, but that's old data. Maybe it has gone up to six.

We are doing some things right. We have universal care, but we don't have access. That is the problem. As well, we don't have people. Not everybody who goes to an endometriosis centre of excellence is waiting for surgery. It is diagnostic. Why is this not helping...so they get the super-duper imaging? They may get laparoscopic diagnosis and they may get treatment in a minor way, but no diagnosis. We do not, now, need to have a laparoscopy to make the diagnosis. We need the signs and symptoms. It's pelvic pain that is unadulterated and continues.

You need to fill in the gaps and get manpower. That manpower comes from the universities, medical schools, and obstetricians and gynecologists. There are three action plans with regard to seeing patients. There is the family doctor. Sometimes the family doctor is the local clinic. Sometimes the clinic is good and sometimes it's very full—or often. Then there is referral to a gynecologist. Often, the situation is very much improved, but that takes time. Finally, if they can't help, you go to the super-duper endometriosis specialist.

We must make sure there are enough of these across Canada, not just four, five or six in Ontario and two, three or four in Quebec. We don't all have that. We have one just starting now in Nova Scotia—

[The Chair, Liberal, Sean Casey]

Thank you, Dr. Jolly.

Mrs. Roberts, please go ahead for five minutes.

[Dr. Elaine Jolly]

Thank you. I get a little passionate.

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

Thank you so much.

I wish, Dr. Jolly, that you'd been around when I went through it. My own personal experience wasn't fun. I know that I'm a little older than most of the women here. Years ago, nobody believed us. It was just, “Oh, well, it's one of those things.”

Thank you for bringing light to this whole situation.

I want to ask you a couple of things.

Can endometriosis be caused after you have children?