Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 41 - Evidence - May 29, 2013
OTTAWA, Wednesday, May 29, 2013
The Standing Senate Committee on Social Affairs, Science and Technology met this day, at 4:13 p.m., to study the subject matter of Bill C-314, An Act respecting the awareness of screening among women with dense breast tissue.
Senator Kelvin Kenneth Ogilvie (Chair) in the chair.
[Translation]
The Chair: Welcome to the Standing Senate Committee on Social Affairs, Science and Technology.
[English]
My name is Kelvin Kenneth Ogilvie. I am a senator for Nova Scotia and chair of the committee.
I will invite my colleagues to introduce themselves, starting on my left.
Senator Eggleton: I am Art Eggleton, senator from Toronto, deputy chair of the committee and custodian of lots of chairs.
Senator Eaton: I am Nicky Eaton and I am a senator from Ontario.
Senator Seth: I am Asha Seth from Ontario.
Senator Seidman: Judith Seidman from Montreal, Quebec.
The Chair: Honourable senators, we are continuing our study of the subject matter of Bill C-314. By agreement, I will call the witnesses from left to right as I face them. That would mean that I will start with Cathy Ammendolea, Board Chair of the Canadian Breast Cancer Network.
Cathy Ammendolea, Board Chair, Canadian Breast Cancer Network: Good afternoon, everyone. I am very pleased to be invited to speak here this afternoon on behalf of the Canadian Breast Cancer Network and to offer our support of Bill C-314, An Act respecting the awareness of screening among women with dense breast tissue.
The Canadian Breast Cancer Network is the only national survivor-driven and survivor-focused organization in the breast cancer sector and is the voice of breast cancer survivors across Canada. We represent the concerns of over 225 partner and member organizations across Canada, as well as the 153,000 Canadians living with breast cancer and all those at risk. CBCN's main goals are to improve access to quality breast cancer care for all Canadians and expand the influence of breast cancer survivors and families in all aspects of the breast cancer decision-making process. It is estimated that nearly 23,000 women will be diagnosed with breast cancer this year and that 5,200 of them will die from the disease. The Canadian Breast Cancer Network supports efforts made by the federal government to help women make decisions that will increase their chances of survival.
As a breast cancer survivor, I know first-hand the importance of education and awareness around screening and treatment of breast cancer.
We are pleased to support this bill as it encourages the use of existing programs to increase awareness, determine gaps in information, improve information and education for women undergoing breast cancer screening and address the challenges of screening with dense breast tissue. We encourage any pan-Canadian efforts by the federal government, as this will ensure that all Canadians have equal access to breast cancer programs, therapies and services.
While we applaud the efforts brought forward by the honourable senator from Ontario in Bill C-314, we would like to see a more clearly defined approach for implementing this bill that will ensure that the desired outcomes are met.
One of the mechanisms that the Canadian Breast Cancer Network would like to see clearly identified is an increased awareness and education for practitioners around screening women with dense breast tissue. The practitioners play an integral role in educating the patients and helping to recommend the appropriate type of screening that would most benefit those with dense breast tissue.
The Canadian Breast Cancer Network agrees that patient education and awareness is imperative when trying to provide necessary information to women being screened with dense breast tissue. We would, however, like to echo concerns that while we want to see increased awareness around this issue, we need to ensure that we are not increasing anxiety in this population.
We are pleased with the federal government's continued commitment to work with the provinces throughout the Canadian breast cancer screening initiative and to provide education and awareness to Canadians through the Canadian Partnership Against Cancer.
We would also like to highlight some specific recommendations on breast cancer screening that will make a difference not only for women with dense breast tissue but all Canadian women.
While there are now four digital mammography machines available across Canada, we need to continue to ensure that we invest in state-of-the-art technology. Digital mammography and MRIs are some of the diagnostic tools that are available to help address the challenges of screening women with dense breast tissue. We urge the federal government to continue to invest in new technologies to help Canadian women.
Currently, there are no available established or travelling screening facilities offered in Nunavut. The federal and territorial governments must work together to establish a screening program for Nunavut that includes technologies that will address the needs of women with dense breast tissue.
In closing, the Canadian Breast Cancer Network would like to reiterate our support for this bill; we are encouraged that the federal government is taking a step in the right direction. However, we need a commitment from the government that this bill will be implemented in a timely manner in ways that will benefit women fighting this disease. On behalf of the Canadian Breast Cancer Network, I would like to thank the committee for the opportunity to speak here this afternoon.
The Chair: Thank you very much. I will now invite Deborah Dubenofsky, Chair, National Board of Directors, Canadian Breast Cancer Foundation.
Deborah Dubenofsky, Chair, National Board of Directors, Canadian Breast Cancer Foundation: Mr. Chair and honourable senators, it is my honour and privilege to serve as the national board chair of the Canadian Breast Cancer Foundation. On behalf of our organization, I would like to thank the Standing Senate Committee on Social Affairs, Science and Technology for inviting us here today.
The Canadian Breast Cancer Foundation is Canada's leading community-driven cancer charity dedicated to funding relevant and innovative research and supporting and advocating for the breast cancer community. Our vision is to create a future without breast cancer. Since our founding in 1986, CBCF's community has allocated over $274 million towards breast cancer research, advocacy, education and awareness programs.
In that time, great progress has been made in the early detection and treatment of breast cancer, but we know there is so much that remains to be done. As you all know, one in nine Canadian women is expected to develop breast cancer during her lifetime. One in 29 Canadian women will die of breast cancer. The disease breast cancer remains the most common cancer in Canadian women over the age of 20.
I am mindful of how far we have come and how far we need to go not only because of my role with the Canadian Breast Cancer Foundation, but as a breast cancer survivor myself. Like many Canadians, I have benefited from the innovations and improvements to breast cancer treatment that have been supported by our foundation and my colleagues.
I was diagnosed with the disease at the age of 42, so that was a few years ago. I am pleased to tell you that I have had an excellent prognosis, in no small measure because of benefiting from clinical trials and participation.
We would like to thank the Senate and the Parliament of Canada for considering Bill C-314 and for taking up this important subject of how we can leverage our resources in relation to the issue of breast density and breast cancer. CBCF believes the intention of this legislation draws out, in broad terms, the need for better awareness and better information sharing and that it is an important and constructive step, particularly when it adds to awareness of breast cancer risk and the benefits of screening. In response to your invitation to be here today, we consulted with members of our network of experts across the country to canvass them for their thoughts on some of the other factors to consider in developing this bill.
Breast cancer mortality rates have decreased by almost 40 per cent since the peak in 1986. Evidence tells us that this is due to earlier detection through regular mammography screening, advances in screening technology and improved treatments. Early screening means breast cancers can be caught earlier, which can mean there are more treatment options available.
The issue of breast density is related to breast cancer risk and early detection through screening. Breast density is the ratio of fat to fibroglandular material in the breast. Based on research findings from a mammography screening trial of almost 50,000 women, it is estimated that approximately 60 per cent of women under the age of 50 and 40 per cent of women over the age of 50 have what are characterized as dense breasts. The challenges for those women are twofold. First, women with dense breasts have a slightly higher risk of developing breast cancer. Second, dense breasts can make it more difficult to detect breast cancer tumours through regular mammography and may often require supplementary screening.
Currently in Canada, breast density is a qualitative assessment made by radiologists, but there are two key issues to consider. First, there are currently no breast density clinical guidelines in Canada. That means there is no requirement to report density or a density rating to patients in Canada. Currently, if a patient wants to know their breast density ratio, they must request this information from their doctor.
Bill C-314 speaks about leveraging available programs and raising awareness, which are good notions. Our respectful suggestion would be to take this opportunity to facilitate the creation of guidelines on how to measure breast density, what risk model to use that includes breast density, enabling more effective reporting of breast cancer risk and a standard approach for health care providers to provide women with this information.
The Canadian Breast Cancer Foundation supports the notion that women be told their breast density. In addition, physicians have an important role to play in raising and discussing these issues with their patients. Having those discussions can help patients make informed decisions about breast cancer screening that is right for them. These would be small but significant steps in going beyond the important business of raising awareness and increasing the information available to Canadians.
Breast density is a risk factor for breast cancer. Women and health care providers should understand and discuss this risk when relevant, but there are other significant actions and policies we can implement that will have an impact for Canadians.
The weight of scientific evidence suggests that breast cancer screening for women aged 40 to 49 is one such area for improvement. The Canadian Breast Cancer Foundation advises that we need to work towards all Canadian women aged 40 to 49 having access to screening mammographies with a health care provider's referral.
I would add that currently only seven of twelve provinces and territories have such screening programs.
The consensus of scientific evidence demonstrates that earlier detection and diagnosis through breast cancer screening mammograms can reduce mortality for women aged 40 to 49 by an estimated 25 per cent. Currently, across Canada women aged 40 to 49 have unequal access to the highest standard of care through breast screening programs. Today, one in six women diagnosed with breast cancer is in their forties.
We hope that you will consider these suggestions in the spirit of providing concrete and achievable steps in integrating breast density as a key factor in the earlier detection of breast cancer.
I would like to close by saying that on October 6, 2013, thousands of Canadians from coast to coast will take to the streets to participate in this year's Canadian Breast Cancer Foundation CIBC Run for the Cure to support our vision of creating a future without breast cancer. Through your invitation to us today and through your consideration of this bill, you are supporting that vision as well. We hope that we have been able in some small measure to assist you with your deliberations. Thank you very much.
The Chair: Thank you. I will now turn to Anne Rochon Ford, Executive Director, Canadian Women's Health Network.
Anne Rochon Ford, Executive Director, Canadian Women's Health Network: I am honoured to be able to speak to you today. The bill raises I am pleased to review with you on behalf of my organization.
The CWHN is celebrating its twentieth anniversary this month. We are a non-profit network of individuals and organizations united by interest in women's health and the policies that shape it. We provide trusted, independent women's health information aimed at improving the health of women and girls via a broad range of activities and resources, which I would invite you to go to our website to view.
We are a fully bilingual organization operating out of Winnipeg and Toronto. For 18 years, we acted as the communication hub for the Centres of Excellence for Women's Health program funded by Health Canada. A complete cut to funding to this program was announced in the 2012 federal budget and was put into effect just last month, April 2013.
To get to the bill, a range of scientific studies have demonstrated clearly a relationship between dense breast tissue and risk for breast cancer. On this basis, Canada's move to pass legislation related to this observation is in keeping with the trend begun in the United States to develop legislation centred on specific mammographic assessments. We note that breast density notification laws have been enacted in several U.S. states.
As with all new policies introduced by Parliament, the Canadian Women's Health Network seeks to ensure that the needs of all or most women are addressed and that what is being proposed is in the best interests of all or most women. Our worry is that this proposed act, by raising as many questions as it addresses, may fall short.
To get to our specific questions about the bill, first, what is driving this bill? Is it the result of scientific inquiry by independent-thinking radiologists and oncologists working in the field, and is it backed by concerned women and their families? Or have the commercial interests of those manufacturing and promoting the new technology filling the mammographic landscape played a role behind the scenes in moving this legislation forward? If this is driven more by the latter than by the former, we must question if this is truly in women's best interests. The CWHN supports the creation of new health policies based on evidence that is free of commercial bias.
Second, the bill does not mention women's need for resources that will improve their awareness and mentions only "the use of existing programs and other initiatives." Does the government intend to provide funds to allow for the work that is outlined in the bill under 2(a), (b) and (c), which represents a considerable body of new research?
Third, if relatively new technologies such as breast tomosynthesis or 3-D mammography are proposed for use to improve the quality of mammographic screening for women with dense breast tissue, we have other questions. While studies may have demonstrated that these tools can provide more detailed and useful readings, their use also doubles the amount of radiation received by the breast. This is a significant consideration given the growing body of evidence showing the harms related to increased radiation exposure.
Fourth, what role is hormone replacement therapy, HRT, playing in the increase and frequency of women with dense breast tissue? We know that there is a relationship between estrogen and dense breast tissue. Up to a quarter of women who start to use estrogen only or combined estrogen and progesterone hormone preparations have increases in breast density. Canada's Society of Obstetricians and Gynaecologists continues to promote a qualified use of HRT. Should we be creating additional methods to detect cancers in women with dense breast tissue or looking more closely at the factors contributing to dense breast tissue and the growing number of women with this?
I do not mean to imply that they are mutually exclusive.
Fifth, given the relationship between obesity and dense breast tissue and the on-average higher rates of obesity in Canada's First Nations communities, are any provisions being made to specifically address the possible additional or different needs of women in First Nations communities? Similarly, if there are racial variances in breast tissue density — and I do not know that there are — are those communities being identified for particular attention?
Those are just some of the initial consideration and questions that we have.
While there is a need for the refinement of screening technologies, we must remember that screening is secondary, not primary, prevention. There is a need for both secondary and primary prevention in the fight against breast cancer, but resources directed to primary prevention should at least equal those aimed at secondary prevention, and at the moment they do not match. Increased funding for more screening technologies will only widen this gap further. Moreover, the hype created by recent celebrity media attention to breast cancer will no doubt drive more women to believe, perhaps falsely, that only more, not less, screening is what they need.
We acknowledge the important role that breast cancer screening plays in the fight against breast cancer, but far more public education is needed about the very slow-growing nature of most — not all, but most — breast cancers.
I would like to turn to the need for more attention to primary prevention. It is commonly understood that in only 5 per cent to 10 per cent of new breast cancers is there a familial genetic link. This raises the question of what is causing the vast majority of cancers. If we relied only on reports in the popular media, which many women do, we might think breast cancer was the result of defective genes we may have inherited or the lifestyle choices that we make. This answers only part of the question. It is estimated that more than half of breast cancers cannot be explained by traditionally understood causes such as genetic mutations, reproductive history and lifestyle factors such as weight gain, alcohol consumption and lack of physical exercise.
A growing body of scientific evidence demonstrates that exposure to a wide range of toxic chemicals — in the air, water, cleaning and personal care products; in household furniture and carpets; in medical treatments; in the linings of canned foods; in the toys our children play with; and in the cars that we drive — can all increase the risk of breast cancer. In our daily lives, over the course of weeks, months, years, we are exposed to a myriad of common chemicals in varying mixtures and in dosages that are shown to be altering hormonal profiles and biological processes that may be leading to breast cancer risk.
Researchers affiliated with the National Network on Environments and Women's Health at York University, with funding in part from Health Canada and the Canadian Breast Cancer Foundation, recently completed a six-year study in which they identified a clear link between workplace chemical exposures and increased breast cancer risk. The key finding of the six-year study was that young women working in the automotive, plastics and food packaging industries are five times more likely to have breast cancer than women working in other industries.
I have provided some extra materials for you about that research.
This work and a growing body of similar work on occupational and environmental links to breast cancer give credence to the concept that some breast cancers may in fact be prevented. There are still many unanswered questions about what causes breast density and the full health impact of increased amounts of screening. While we support the need for patients being made aware of information held by their care providers, we must also invoke the precautionary principle in making policies and decisions about where our health care dollars are best spent. Thank you.
The Chair: Thank you all very much. I will now turn to my colleagues for questions. I will start with Senator Eaton, to be followed by Senator Seidman and Senator Eggleton.
Senator Eaton: Thank you so much. This is such a fascinating topic. As one of our witnesses said the other day, a doctor from B.C, it is a complicated issue.
Ms. Dubenofsky, how can we legislate this when you ably pointed out in your presentation that we do not know how to best measure density? We have no current breast density clinical guidelines in Canada. What risk model do you use that includes breast density, enabling more effective reporting of breast cancer, a standard approach? How can you legislate a standard approach for something like breast density?
Ms. Dubenofsky: That is at the nub of all of the debate about how best to raise awareness, to prevent breast cancer in the first instance, as my colleagues have also said. Then, once detected, the question is what to do about that and how to ensure standardized care, where that is appropriate, recognizing that everyone's breast cancer is individual to them.
I think it would be fair to start this dialogue and to look at the best that science has to offer to come up with some minimum standards of care, as we have in other areas, and to be able to say to practitioners that the most important thing is to be speaking to patients about their breast density and to be making them aware that that is a factor.
There are, of course, some jurisdictional issues with provincial governments that we are keenly aware of. The importance, we feel, is for the federal government to leverage and lend its voice to the need for a comprehensive program and to do that as a first step.
Senator Eaton: Is that legislation or is that more awareness and education?
Ms. Dubenofsky: I would say that it is probably twofold. Raising awareness and doing public education are critically important. What happens, then, when you get women — and men to a lesser extent — educated about what their risk factors are, the general experience then is that they want to speak to their family doctors or to specialists and say, "So am I in that category or am I not? I exercise. I eat relatively well and I limit my alcohol intake. I do all of those things. I have had children and do all of the things that are supposed to reduce my risk, and here I am."
I think, again, to have a standard of care and to ensure that physicians have a responsibility to have that dialogue with their patients are important. That is currently what is missing.
Senator Eaton: Yes. I guess I am just wondering how you can legislate a relationship that you have with your doctor. As you said, every woman's breast cancer is individual.
Ms. Dubenofsky: Yes.
Senator Eaton: There is age, as Ms. Rochon Ford pointed out, demographics, perhaps, weight and lifestyle.
Ms. Dubenofsky: Yes. The short answer is that you cannot compel good behaviour, and you would know this all too well as legislators. You can only encourage. I did not mean to be provocative. You can, I think, have best efforts. If we look at organizations like the Canadian Medical Association and their provincial associations, I do think that there is a role for physicians. We would hope that they would take this up as a new frontier for them in terms of breast health.
Senator Eaton: Ms. Rochon Ford, could you elaborate a little more? We have been talking about breast density as one of the causes. What are some of the other factors that we should be looking at as equally important or more so than breast density?
Ms. Rochon Ford: I guess what was obvious with my presentation was that the need to look at what is causing breast cancer in the first place should have a strong environmental and occupational lens on it. I say that because it currently does not for the most part. When we talk about primary prevention and what factors are known to contribute to breast cancer, the conversation seems to stop at lifestyle. While lifestyle is extremely important and there is no question that we need to be educating about the full range of issues there, it should not sideline the discussion from what is also a growing body of knowledge, which is the relationship of environmental, occupational and other toxins to the contribution of the development of breast cancer.
One of the harms of the focus on lifestyle is that it ends up making women feel it is their fault: "I drank too much alcohol; I did not have my children at the right age; I did not breastfeed," et cetera. When they are diagnosed, they say, "But I did all the right things. I exercised, did all those things that the literature told me are important contributors to breast cancer." We are not looking at the things that they do not have a lot of control over.
This issue is so critical at the federal government level because it is a legislative issue. At the provincial level, it is related to health and occupational safety legislation. At the federal level, it is related to the regulation of chemicals. We are in the midst of a large process through Environment Canada and Health Canada looking at the many chemicals in the workplace and in the environment and their relationship to human and environmental health.
This is a really important time. It is a critical juncture and an opportunity to be making the links to what another body of research is finding is the connection to not just breast cancer but other cancers as well. That is my plea.
I raised the issue of plastics in the automotive industry because they are endocrine-disrupting chemicals. Endocrine- disrupting chemicals interfere with the endocrine system, which produces such hormones as estrogen, which we know increases the risk of breast cancer.
Senator Seidman: I think it was Ms. Rochon Ford who mentioned American legislation and the fact that the U.S. already has a significant amount of experience with legislation in the area of breast density awareness.
This has become fairly controversial, so it has demonstrated to us that this is a very complicated area. We heard witnesses last week who also contributed to the concept that we are dealing with something that is fairly complex.
You all mentioned women with dense breasts, but you all went on then to talk about Canadian women in a more general way, as if dense breast tissue is one risk factor. However, there are many others that have to be considered, perhaps in combinations.
I would like to ask you about the American experience, specifically in the context of the chair of the American College of Radiology, who put out a serious caution and a certain degree of concern about legislation in this area. She said:
Studies of ultrasounds have focused on women at very high risk of breast cancer, not the general population. Even then, ultrasounds found only a few more cancers than mammograms alone, Monsees says. Yet giving ultrasounds to everyone dramatically increases the cost of screening, the number of "callbacks" that trigger repeat imaging, as well as unnecessary biopsies, which cause additional pain and anxiety, Monsees says.
Given that 40 per cent, in a conservative estimate, of women going for breast screening have heterogeneously dense breast tissue, as we have been told, how would this impact the system? There is the delicate balance in the system of women who need to then go on for further testing with more mammography, various other kinds of radiological examinations and, perhaps, biopsies. How do you see this impacting the system? That is a huge number if you think about it. Out of every 1,000 women screened, 400 will have dense breast tissue. That is kind of awesome to imagine.
If you could please help me with that, I would appreciate it.
The Chair: She put the question to you, Ms. Rochon Ford, if you want to start.
Senator Seidman: I am happy to have anyone answer the question. I was picking on the American legislation, which was mentioned by Ms. Rochon Ford, because it is an interesting example where it is very prevalent right now. There is a concern over doing this. I am interested in hearing what all of you have to say about this because you are advocating in a couple of circumstances for survivors and women who experience these things.
Ms. Dubenofsky: It is always a very delicate balance, and it is not confined to the discussion of the density of breast tissue. You are quite right. There will always be increases based on additional public education and awareness campaigns. We have seen that in the past.
I cannot help but also share my own personal experience in addition to having been with the Canadian Breast Cancer Foundation for 13 years as a volunteer. I have never met someone who has been touched by this disease who regretted going for the mammogram or a callback or those additional discussions with their physician because it led to the earliest possible diagnosis and a treatment plan to give the best possible results.
I do think it is always that delicate balance. Mindful of the cost and the need to ensure that comprehensive program across the country, I do think that is something to bear in mind. However, I do know that the sooner we detect those cancers and the sooner a treatment plan is put in place, then the better the prognosis and the reduction in mortality rates.
Ideally, breast cancer should start to be managed as almost more of a chronic disease rather than a life-threatening cancer. That would be our hope.
Ms. Rochon Ford: I think this gets at the heart of a bit of the tail wagging the dog. There is a strong cultural expectation that if something is available, when it comes to our health care, we should have it. We are entitled to it. We are entitled to that exceedingly expensive drug or that series of tests, not just one. That has evolved in, historically, a relatively short period of time.
The issue that the Canadian government has to grapple with is somewhat different from the American one. I raised the American situation without acknowledging that obviously there are other factors at play because of the differences in the nature of our health care systems. I would suspect that insurers would have a different take on this in the United States.
The issue in Canada centres, I think, around this growing expectation, heavily fuelled, as we have seen in very recent history, by the media and celebrities. I understand that recently the number of women going for double mastectomy has demonstrated as increasing in certain clinics in the U.S. since the Angelina Jolie breast cancer gene story.
It comes back, again, to the need for education. Sometimes the expectation that people have, which is fueled by fear, needs to be tempered. I believe there it is a role for physician education, as a start. I think also organizations like the CBCN and the CBCF play an important role because they have such direct contact with women dealing with issues related to breast cancer; we have less so as an organization.
There is a need for clear, non-commercially influenced information and education to show that sometimes a watchful wait, in close cooperation with your doctor, is better than heavy duty intervention, and also to show that their particular case may not warrant what it is they think they need, because they have heard it so much in the media or social media or wherever.
Ms. Ammendolea: I want to start off by saying that breast cancer is not one disease. I do not have a medical background, but I have been doing this for 13 years plus. Just like the biology of the tumour in a breast cancer patient, breast density is different from patient to patient.
Myself and CBCN, what we would like to do through this is to inform and educate the patient. Just like targeted therapy for the diseases that we have now begun to recognize, I think patients should be informed that if they have dense breasts — we are talking about dense breasts today — they should navigate the system and find out what it is that they should do.
Each patient is different. Each individual will show a different breast cancer. Breast cancer is not the same for everyone. For us, I think we want to stress the fact that education and awareness are what we should be promoting. If dense breasts will make a difference in a woman's life, she should know about it and what to do, if she is to do anything about it.
Senator Eggleton: Thank you for all your comments. You have commented extensively and asked questions about Bill C-314, the Breast Density Awareness Bill. I should point out that the bill is not formally in front of us right now. It is sitting over in the Senate. What has been referred here, at Senator Seidman's request, is the subject matter so we can more fully explore it. I would also point out that it is a private member's bill, not a government bill.
Let me go to a couple of question areas, and any or all of you can answer them.
We have been hearing a bit of this, that there should be greater awareness. If mammography produces a result that says they have dense breasts, that in fact that should be divulged. At the same time, people are saying not to increase the anxiety in this population, as I think some of you expressed.
How do we find the balance there? How do we do that? As I understand, the first test, if it is done under traditional mammography, would not be conclusive enough. You would have to go on to a further test to determine whether the breast density had a cancer-related problem or not. How do you divulge all of this but at the same time not increase anxiety?
Ms. Ammendolea: It is very hard not to increase anxiety, no matter what. If they call you back for a second mammogram, it is anxiety-provoking. Women and the general population are prepared to go through a little anxiety to get to the bottom of what the real situation is. It is anxiety-provoking, but that is the step you have to take.
If we are talking about breast density, they need to know and be informed properly of what is the next step. That is based on her physician and the findings related to her diagnosis or pre-diagnosis state.
Senator Eggleton: Perhaps the way the doctor explains it might help reduce some of the anxiety, although you cannot totally eliminate it.
Ms. Ammendolea: That is a whole different topic.
Senator Eggleton: Does anyone else have anything to add?
Ms. Dubenofsky: I agree with Ms. Ammendolea that, by its nature, this is a very difficult subject. There is nothing quite like the diagnosis. There is not anything quite like having to go back for a second or a third attempt to get an accurate picture of what is going on with your breast health.
The only thing worse than that would be to do nothing and not find the breast cancer in the first instance. It is a very difficult discussion.
I would hope — and what the Canadian Breast Cancer Foundation would say is — that the education of physicians and ensuring that there is a standard and a duty of care as it relates to this is really what will, hopefully, make the difference. Thank you for that.
Ms. Rochon Ford: I would add that we need to go back one step further and consider, as I said, the role that media might be playing in contributing to anxiety. It is completely human and normal for someone to have anxiety, but there is a lot of fuel added to that, misinformation perpetuated as a result of misinformation out there through the media. The education of journalists with proper information about this is also important.
Senator Eggleton: My second question deals with equality of access for women across the country. If there is a federal role, this might be it.
Ms. Ammendolea, you mentioned there are no screening facilities in Nunavut. Does that also apply to the other two territories as well or just Nunavut?
Ms. Ammendolea: Just Nunavut.
Senator Eggleton: Ms. Dubenofsky, you have said that currently across Canada women aged 40 to 49 have unequal access to the highest standard of care through breast screening programs.
Ms. Dubenofsky: Yes.
Senator Eggleton: Tell me more about that and what you think the federal government could do on that.
Ms. Dubenofsky: Seven of twelve provinces currently have screening programs, so it is not uniformly available across the country for various age groups. Provincial jurisdictions, provincial governments and health authorities have taken different views on how to — not to be crass — slice the pie, relatively speaking, and have concentrated the majority of resources on what they would deem to be high-risk women.
The challenge, of course, is how you know if you are a high-risk woman unless you have had the dialogue with your physician, about the factors, like breast density or your age or the genetic mutation and so on. From a federal and a provincial level, it becomes a bit of a circular debate about where is the most important intervention. Our position as a foundation would be that women aged 40 to 49, particularly high-risk women, should have access to screening programs across the country. We would hope that that is something that the federal government would see as an important flag, as it were.
Senator Eggleton: Are you promoting any particular screening program? There is the digital versus the traditional X-ray, mammography, and then the United States is bringing in, in conjunction with traditional mammography, the ultrasound; the FDA has brought that in. Is there any particular area of technology that needs to be advanced more than others?
Ms. Dubenofsky: I was saying to my colleague that although I do watch Grey's Anatomy on television I actually am not a physician, although sometimes I fancy myself one. I am ill-equipped to answer that question. There is always raging debate about what are the best machinery and techniques to use. I understand you will also speak with practitioners, so perhaps they would be better suited to answer that for you.
Senator Cordy: Thank you very much to each of you. You have been very helpful in the whole discussion overall about breast cancer. For anyone listening, it is a very educational session to have you here.
Ms. Rochon Ford, you first spoke about the Canadian Women's Health Network being a communication hub for the centres of excellence and you said that effective April 13 all your funding has been cut in Budget 2012. What was that funding used for?
Ms. Rochon Ford: The funding came through a program called the Women's Health Contribution Program, which was set up in the mid-1990s. At the time it funded five centres of excellence in women's health across the country and the Canadian Women's Health Network. However, that changed a little bit over the years. At a budget of about $2.2 million a year, it funded those centres until April of this year.
I mentioned the role that the Canadian Women's Health Network played, which is that we were the communications arm of that. The centres themselves produced research that responded to federal government policy relevant to women's health, looking at a wide range of federal government policy and ensuring that a sex- and gender- based analysis was applied to it, for example. There was a broad range of work done but that was the main mandate that the centres were set up for.
We were told in April of 2012 that the entire program was being cut and we would have until April 2013, so all of those centres have lost their funding. Two of them have closed. We have cut back significantly and are trying to find funding to keep going.
Senator Cordy: Of all the centres of excellence for women's health, two are gone now and the other two do not have funding.
Ms. Rochon Ford: Right.
Senator Cordy: That is incredibly bad. I did not realize that. Thank you for bringing that to our attention.
We are not dealing with the legislation, as Senator Eggleton said earlier. We are dealing with the body of it, what is in it, rather than the legislation itself. Is this legislation actually putting the cart before the horse? Should other things be done before we have this specific piece of legislation? Of course, any legislation dealing with breast cancer is positive in the sense that it brings attention to breast cancer, which is always a good thing.
You each prompted a lot of questions when you were speaking on the need for research and the need for finding the causes of breast cancer. Should that come before the bill or should the bill be first? I do not know.
Ms. Rochon Ford: To be honest, I was surprised to see the bill when it was first brought to my attention. I am not as directly involved as my two colleagues are in specifically following any legislation related to breast health, but it did seem exactly like what you said, the cart before the horse. It made me wonder, with all the things we could focus federal government attention to with respect to breast health and breast cancer, why this particular one.
As I said, I would argue for the need for more education trickling down to girls and women and more focus and resources on what in this case is causing dense breast tissue and why it is on the increase.
Ms. Dubenofsky: I would say that all of these things are incremental steps in improving the body of knowledge and our treatment efforts. Each province has a range of education awareness programs. Our foundation prides itself on the education and awareness programs that we bring. Firstly, I do think that the interest in this bill and the gap that it is filling is, first and foremost, again, education about breast density and its contribution as a risk factor. Secondly, if you were to take advice about developing minimum standards and so on and ensuring that physicians see that as part of their role to discuss breast density with patients as a potential treatment as opposed to just talking about either genetic mutations or some of the other lifestyle determinants, we would see that as positive.
To use your language, is this the cart before the horse? I would say as long as it is in the barnyard I am okay with that so far.
Senator Cordy: What do you mean by "minimum standards" that you spoke about? Could you clarify? Do you mean for doctors?
Ms. Dubenofsky: For doctors, and to be able to compel the discussion about sharing breast density factors. It should not be the responsibility of the woman to ask a physician whether they have dense breasts. When that comes to the attention of a physician, it should be part of the discussion about potential risk areas.
Senator Cordy: Should we be looking at the causes of breast cancer? The Angelina Jolie case has been all over the place. The federal government provides funding for a great deal of research and takes it away from women's centres of excellence, unfortunately, but should that be a main focus?
Ms. Ammendolea: I would say one thing about the Angelina Jolie case. That case involves a BRCA gene mutation. I want everyone to understand that she does not fall under the breast cancer theme that we are discussing here. That is one particular type of breast cancer, and it was well defined in her article. Ms. Jolie did not say anything that was not factual and evidence-based in her commentary or her disclosure of having had a bilateral mastectomy. That is one thing I wanted to clarify. Angelina Jolie has been brought up several times here, but that is one type of breast cancer.
Senator Cordy: You have done an excellent job talking about the different types of breast cancer, but I am not sure that Canadian women and girls get that. I certainly do not look upon a wide variety of breast cancers, and I think most women are probably similar. You have done an excellent job on that. Thank you.
Ms. Ammendolea: Thank you. One thing our organization would like to continue doing is to promote good, sensible, evidence-based education so that the confusion is not out there. We always try to teach our patients, or anyone that calls on us, to lead them to understand what they are reading and how it relates to them.
In terms of the breast density issue — or something else in your body — I would say like to say that it is a form of education. If someone, whether it is a woman or a man has something, I think you should be aware of what you have. Breast density is something that not everyone has, and if you have it, you should be told what to do from that point on. That is the question. It is education. Again, it is informing the patient to understand they have this condition and what they do from here on. In the big centres and cities, women are informed. They know that they have breast density issues, but in the smaller, rural communities, it is not discussed as it is in the teaching hospitals. We are trying to address the gaps across the country and inform everyone at the same level.
Ms. Rochon Ford: I think it is unfortunate the amount of attention that has been drawn to the issue of breast cancer as a result of a celebrity case. The work that we and the Canadian Breast Cancer Foundation were involved in looked at the women who worked in the plastics sector of the auto industry and are being diagnosed with much higher rates of breast cancer as a result of the chemicals they are working with every day so our cars can have the shiny plastic parts that now make them up. The imbalance of attention to this issue is shocking, and I think that we need to speak about it whenever and however we can. That is just one example of people being exposed to things that are putting them at higher risk for breast cancer.
Senator Seth: I think it is a very interesting topic going on, and today listening to all of you.
Ms. Dubenofsky, you have written that the rate of scientific evidence suggests that the breast cancer risk screening for women aged 40 to 49 is an area where we should be looking for more improvement. The Canadian Breast Cancer Foundation advises we need to work with all Canadian women aged 40 to 49.
Having been that age, as you know, it is a very delicate age, and women aged 40 to 49 already have dense breast tissue, regardless of heterogeneous breast density. Most women, when they go for an ultrasound or mammography, have some genetic or family history of cancer so they are screened at the point.
Do you think that there are more chances of getting radiation if we make it routine, which can itself cause cancer, more side effects? Women of child-rearing age would have more problems having babies. That is more likely to cause more false positive results doing the biopsy, unnecessarily giving them more anxiety, more work for the physicians, more funding required here.
Do you not think we still have a big gap to improve, making our infrastructure stronger, more digital mammography, having automated ultrasounds imaging?
I do not understand how passing this bill will improve awareness. What will happen? Whenever they go for a screening, they are told, "You have dense breast tissue." I am sure physicians will notify them when to come next time. How will you improve, having this bill to legislate? How will we get benefits?
Ms. Dubenofsky: Thank you very much for the question. I think the important measures that we would like to see in place are developing a way, first of all, to measure breast density, and of dense breast tissue, to know the range that would lead to a higher risk factor. Once that has been established, as you said, it is the discussion between the physician and their patient about the best treatment plan for them, and you are quite right. In many cases, it is not going to be additional screening. It is going to be watching; it is going to be breast self-examination; it is going to be a range of thing.
The important perspective, I think, is to ensure that there is a discussion in the first instance.
I have often heard and people often worry about false positives or talk about the incidence of "unnecessary biopsy." To me, I do not understand what an unnecessary biopsy would be. As a breast cancer survivor, I would say — and did say to my physician — I would like you to do whatever is necessary to tell me what this beast is and develop a treatment plan that works best for me. Everyone will be different. Some of us like to rip the Band-Aid off quickly, some of us like to peel it off more slowly. Your question is well-founded. I do not know that there is an answer except to have the discussion in the first instance.
Senator Seth: Do you not think we require more research about dense breast tissue, heterogeneous breasts, rather than passing the bill, creating more anxiety?
Ms. Dubenofsky: I would leave to your judgment about what is the best timing for the passage of the legislation. We would say there is a need for additional study, to develop additional risk-based models and to continue to develop an evidence-based system. I take your point and will leave to you what is the best way to approach that.
Senator Munson: I have a brief question, and it was alluded to before I came in. It had to do with no organized breast screening programs in Nunavut, I understand. To me, that is a problem. Is it not? There are mobile services in Alberta, B.C., Manitoba, Nova Scotia, Ontario, Quebec and Saskatchewan, but no mobile units in any of the territories.
Are we not letting down our First Nations?
Ms. Ammendolea: Yes we are.
Senator Munson: As a society, what should we do? What should we do to change that? How can we change that? As senators on this committee, we have an opportunity to talk to somebody, a bureaucrat, a minister, whomever, because this is a very critical issue. What is needed in Nunavut and in the territories to change this?
Ms. Ammendolea: At CBCN, we have already started doing educational retreats, starting dialogues, discussions with the communities in Nunavut, and we hope to continue these conversations and dialogues and we hope to promote education and awareness to these communities. That requires lots of preparation and lots of funding, which our organization has to depend on in order for us to promote this education and in order for us to keep our relationships with the community representatives. There is a lot of work to be done. It is a difficult situation, and we are trying our best to get to these remote areas. We are underserving our First Nations populations.
Senator Munson: How much money is needed, do you think, and where should the money come from? That is basically the question. What should we do?
Ms. Ammendolea: How much money — that is a very good question.
Senator Munson: Is this all delivered by provinces? Is that what we are talking about here, the mobile services?
Ms. Ammendolea: Yes.
Senator Munson: Is there any way, because of the federal responsibility with our Aboriginal people, that we could work on accessing — sorry; I know this has nothing to do with the bill, but it has to do with women.
The Chair: A couple more words, sir.
Senator Munson: Thank you. In other words, how do we advocate? How do we get there? Let us have a level playing field in this country. The federal government owes it to the Aboriginal people to provide mobile services to work with the territories and Nunavut. That is where I am coming from.
Ms. Ammendolea: I totally agree, so just connect us with the right people and give us the funding. We are already starting to do our work as best as we can with what we have.
Ms. Rochon Ford: I would add that if any of you have personal relationships with the current Minister of Health, then that would be a very good place to start as she is someone who knows that area. It sounded like it was news to most people around the table and probably to most Canadians that there is no screening in Nunavut. She lives there. We need to have pressure put on at many levels. You folks have more clout than we do.
Senator Enverga: Thank you for your presentations. They were great.
We have been talking a lot about ways to check on cancer. One of them is MRI breast cancer screening. As an advocate for women with breast cancer, in your view or experience, how confident are you with the screening? Does it work? For what percentage does it work? What do you think about it?
Ms. Dubenofsky: I would say that screening works. Screening helps women and their doctors to have a foundation from which to measure changes in breast health. The trick is to develop a baseline at an appropriate age so that, again, those changes in breast health can be measured and identified and, if necessary, a treatment plan developed. I would say that there is and we can have confidence in those screening programs.
Senator Enverga: When you get to dense breasts, how confident are you with that notion?
Ms. Dubenofsky: With respect to breast density, I think the challenge for women, physicians and legislators is to develop a system where we can measure appropriately breast density and to develop what a risk model would be from that and to assess its risk relative to other risks so that, as my colleagues have said, it is not inflated beyond other risks. It is simplified as one in a list of others.
Senator Enverga: I think it was mentioned — correct me if I'm wrong — that an MRI is the best one so far available?
The Chair: Senator, we have the radiologists appearing tomorrow. They will be dealing with this very issue and the details on the standards of the different ones. I think Ms. Dubenofsky has done a good job of indicating the general issue, but I think perhaps the nature of your question would be better delivered tomorrow.
Senator Enverga: As a follow up to that, when you get to the screening, how would you compare it to breast self- screening? Would that be effective for dense breast patients?
Ms. Dubenofsky: The short answer is breast self-examination is very important. If I were here in my advocacy role, I would be handing out shower cards to remind all the women here in the room about the importance of doing monthly breast examinations. It is not replaced by more sophisticated machinery that can actually detect the incidence of a tumour at a very early stage.
I can tell you from personal experience. I experienced a change in my breast tissue. My doctor did not discover anything. A mammogram did not discover anything, but an ultrasound did and picked up something the size of my baby fingernail. That is a great time to find it before it is much bigger. All of those things working in concert are what we need to have happen.
Senator Enverga: Is there any difference between self-screening for dense or non-dense breast tissue? Is it more effective or less effective?
Ms. Dubenofsky: Breast self-examination is just that. The density of your breast tissue will mask certain things, as will the fat content, as will — and you might hear some describe it as this — ropey breasts. Sorry; it is a very delicate subject, obviously. Each one of those things presents a particular challenge. Most women know their bodies and do know when there are very obvious changes. However, tumours do not play by those rules, and those are the ones that need to be detected through a screening process.
Senator Enverga: It is both, then.
Ms. Dubenofsky: It is both.
Senator Dyck: Thank you for your presentations this evening. This is quite a complicated issue. I am running through my head the various risk factors that you have all outlined. Tonight we are talking about density of the breast tissue; I think other people mentioned weight, lifestyle, occupational exposure to endocrine-disrupting chemicals, age, perhaps race, and genetics.
My question is this: When you are either a patient or a physician, and I come in and I have dense breast tissue, it will not likely be just one risk factor that I have. Should we have a bill that addresses every risk factor? Do we have bills that say a physician has to tell me my body mass index is way too high and therefore I am at risk for breast cancer? Do we have a bill that says because I work with endocrine-disrupting chemicals this pushes my rate up — I think you said five times? Do we compel physicians to do that? Why should we compel them to tell us about breast density? That would be my question.
Ms. Rochon Ford: It sort of answers the comment I made earlier, which was about seeing this bill and wondering where it came from. If this bill had in fact done what you are suggesting, I think it would probably serve a much greater purpose. It is a bigger piece of work, but I think it would be extremely valuable to the women of Canada.
Senator Dyck: I think it is important for a physician to give that information to the patient, but I am wondering if compelling a physician to do that really belongs within their training in their professional bodies. I do not know if they have a professional code of ethics that says if you detect this, then it is your duty or your responsibility, as a physician, to tell that patient that she has dense breast tissue. Would that be a route that might fill the kind of gap that is identified in this bill?
Ms. Dubenofsky: I would say that having a standardized approach for health care providers and education of health care providers so that they appreciate the relativity of breast density versus other factors is the conversation that we would like to see happen.
If this bill had not been introduced, there would still be physicians who were doing a fine job speaking to women about breast health, particularly those who have either self-identified or have been identified as high risk. The challenge, of course, is for those who do not yet know they are high risk or who have not been identified as high-risk. How do we ensure that physicians across the country are approaching this and thinking about some of these factors so that they can have those discussions?
Ms. Ammendolea: I just have a comment to make. I am willing to bet that, tomorrow, when you speak to the radiologist who will be sitting here, he will say that it is reported. If someone is having imaging done and the breast is dense, it will be reported on the radiology report. That will be there. It will be forwarded to the physician, whoever that might be, a medical oncologist or a primary physician. I do not know. What do they do with that afterwards?
For me, it is just to advise the patient if there is something that is worrisome because of the dense tissue in her breasts.
Ms. Rochon Ford: In terms of where the jurisdiction for this falls, historically physicians were not obligated to report if a child was showing signs of abuse. They now have an obligation to report that. It is that same kind of process, which would be through the provincial regulatory bodies. It is not at all unrealistic that that expectation be there.
Senator Dyck: Thank you.
Senator Martin: Thank you very much. I think my colleagues have asked some of the questions that I had been wondering about, so you have answered those.
I am also thinking of reading your bios on the descriptions of your organizations and how the work that you are doing is quite important in filling in those gaps. It seems that, in the last series of questions, we have sort of identified the gap. It is not that the doctors are unable to inform patients but how, once information is gathered, that information about the dense breast tissue is passed on to the patient in a way that will be helpful. It is also that follow-up can happen as a result of it.
You have all talked about the importance of education and raising awareness. Is that what this bill might address, or is that already happening, in your opinion, based on the work that you have done in your regions and that has been done by organizations like yours that are really focusing on education, awareness and advocacy?
Will this bill help your work, or are you already functioning quite effectively within the current system to do that kind of educating and raising of awareness?
Ms. Ammendolea: Very briefly, there are regions that are aware and other areas that are not aware of how to work with a report of dense breasts. What we, as CBCN, would like to see is that everyone is informed properly and gets proper navigation to what needs to be done, once that is reported.
In my work, I believe that, in the big centres, in the big cities and in teaching hospitals, that is being done currently, and it has been done for a long time. We worry about the regions where there are not any oncologists and where they depend on telecommunication with an oncologist in a big city. We want to bridge the gap across the country and ensure that people are informed in the same way, at the same time and with the proper information.
Ms. Dubenofsky: I think this bill, as it is currently drafted, would serve the purpose of raising awareness about breast density as a risk factor. Respectfully, what it does not do is the "so what" piece. The "so what" piece for the Canadian Breast Cancer Foundation would be developing guidelines for measuring breast density, reporting on breast density and developing a body of knowledge and evidence that will help, over time, to tell us about the risk, relative to other risks, of breast density. That is our respectful suggestion about how the bill could be improved. However, senator, it would accomplish the goal of additional education and awareness.
Senator Martin: The second piece is what is missing?
Ms. Dubenofsky: The second piece is what we would say is the next important work to be done.
Ms. Rochon Ford: I do not have anywhere near the direct experience that my colleagues do in working closely with women who are either dealing with the question or who have been diagnosed, but one thing that I would say in terms of changing the legislation specific to this question is that it currently reads, if I am not mistaken, as being entirely around physicians and around the importance and the role of physicians. In fact, there are a number of other health care players who would be extremely important and should be included — should be named — in this context — nurses, nurse practitioners, midwives, La Leche League counsellors, naturopaths — people who deal directly with women in relation to their breast health. There is a whole range of other health care providers besides physicians. I do not have it open in front of me, but I think the bill just deals specifically with physicians. That would be one suggestion in relation to your question.
Senator Martin: That is a good point because not everyone has a family doctor. Women walk into clinics, and there are different ways for women to access services. In receiving the information, that is the missing piece, or the gap, that we have to ensure that we fill.
That was very helpful. Thank you very much.
Senator Eggleton: I have one more question, and it is primarily to Ms. Rochon Ford, although others may respond if they wish.
In your presentation, you said, "It is commonly understood that in only 5 per cent to 10 per cent of new breast cancers is there a familial, genetic link." You go on to say that defective genes, whether they are inherited or whether there are lifestyle choices being made, are part of it. However, a major, growing part of the causes of breast cancer comes from exposure to a wide range of toxic chemicals. You specifically brought us some material relevant to the workplace and to women in the automotive plastic industry.
Most, if not all, of the automotive industry is in Ontario. It would be governed by the Ontario Employment Standards Act. Also, if there are strong unions anywhere in the private sector these days, they are in the automotive sector. Is this getting a handle on this? It sounds like a pretty significant part of new cancers are coming from this kind of industrial exposure.
Ms. Rochon Ford: It is certainly a big red flag that needs much more attention. As I said, we have currently lost all of our funding. The centre that was responsible for doing this work has also lost its funding and is looking for more funding to do work in this area. There are many other researchers who are looking into the area not only of occupational but also of environmental exposures. We do not know if that 50 per cent that is not answered by all the other factors is environmental and occupational, but there are certainly many signs pointing to it.
The other point to make here is that it is not just exposure that one gets in the workplace. That is a particularly egregious example of women working in the plastics industry and some other manufacturing sectors. We are all getting that kind of exposure more and more, as are our children, through carpets, through the inside of our cars, through the lining in cans, through all the various personal care products and housecleaning products we use, which are full of chemicals that are increasingly being shown as having this capacity to play around with our endocrine system, endocrine-disrupting chemicals.
That is a significant area of need for more research, more attention and more discussion. The reason we produced that specific pamphlet with the plastics workers was because the women themselves, working in these industries, did not have the details and did not know which chemicals were harmful and what we know about them. "Should I be more careful with getting it on my skin?" All those kinds of things.
Senator Eggleton: There is still more need for education in that area?
Ms. Rochon Ford: Yes, definitely.
The Chair: Thank you very much.
Thank you, colleagues, again, for your questions in this very important area.
I want to thank the witnesses on your behalf for being here, for the clarity of your responses and the expressions of concern with regard to this area.
With that, I declare the meeting adjourned.
(The committee adjourned.)