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Jocelyn Downie
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Jocelyn Downie
2021-06-21 18:35
Thank you and good evening. Thank you for the invitation to be here.
As you heard, I'm Jocelyn Downie. I am the Palmer chair in public policy and law at Dalhousie University. I've been a legal academic researching and writing on medical assistance in dying for a long time, and have been intimately involved in many of the prior processes relating to the topics that are before you as a committee. I offer my comments tonight against that backdrop.
On your process, for both phases of your work, I have two hopes and challenges to offer. My first hope and challenge is that you build on the work done by those who have gone before. This includes legislative committees, court cases, expert panels and official data collectors. I hope every member of the committee will read all of these reports and decisions. I don't say that lightly. I appreciate that it's a lot, but it's worth it. You will then understand how and why we got here and have a good foundation to consider the questions about how we should move forward. Don't reinvent the wheel or rely on what other people tell you these primary sources said. This is especially true of the Carter decision.
My second hope and challenge is that you deliberately and explicitly make evidence-informed recommendations using rigorous standards of evidence. This means following the pyramid of reliability, which is appended to the opening statement that I sent to the clerk. It also means looking to the considerable body of peer-reviewed and court-tested evidence about MAID in Canada. There is no need or justification to make recommendations based on anecdotes or untested narratives. Where there are gaps in reliable evidence, don't fill those gaps with unreliable evidence and use that to inform your recommendations. Rather, call for and facilitate more research.
Now, on the substance of what you have set out for phase one, I have seven points to get on the table and into the record before we get into what you want to talk about. For obvious reasons, I will limit myself to issues of federal jurisdiction.
First, there has not been a slippery slope. The recent change to the eligibility criteria merely returns us to the Supreme Court's Carter boundaries.
Second, as you heard from Health Canada two weeks ago, the number of cases is going up, but that's what you would expect when something becomes legal, awareness goes up, access goes up, stigma goes down and the numbers go up. It's not a bad thing.
Third, the high-quality data about the involvement of and access to palliative care and social and economic vulnerability do not support the concerns raised about these during legislative debates. The data reflect a similar phenomenon to that observed in other permissive jurisdictions. Those who access MAID are disproportionately privileged as opposed to socially or economically vulnerable.
Fourth, several problems with Bill C-14 became evident through the period of implementation and were corrected by Bill C-7—notably, reducing the number of witnesses, removing the 10-day waiting period and introducing what's known as the final consent waiver. The most egregious unconstitutionality was remedied by removing “reasonably foreseeable” as an eligibility criterion.
Fifth, please do not misunderstand or misstate the meaning of “natural death has become reasonably foreseeable”. This phrase did not and does not mean “terminally ill” or “imminently dying”. Rather, as the Minister of Justice himself has explicitly confirmed, it means what it had come to be understood to mean in clinical practice, and that is, most definitely, not terminally ill or imminently dying. Rather, it means “with sufficient temporal proximity”—which could be years—or “on a predictable trajectory”—which could mean the diagnosis with ALS.
Sixth, MAID in prisons needs and deserves your attention during phase one. I hope you will call as witnesses Correctional Service Canada, the correctional investigator of Canada, University of Calgary professor Jessica Shaw, and Dalhousie University professor Adelina Iftene. They can explain the problems and suggest—or receive, in the case of CSC—solutions.
Finally, I hope you will recommend that the federal government use its convening power and the power of the purse to encourage, catalyze and facilitate essential research. Our courts and policy-makers benefited enormously from the unique Dutch approach to MAID research, most notably their five-year death certificate studies. We could pay it forward to other countries and avoid having our policy debates go in endless circles if we did such research ourselves. That means government-commissioned and -funded, yet independently conducted research. Without a doubt there are challenges—the variability in our death certificates, for one—but they are not insurmountable.
Thank you for your attention, and I look forward to your questions and comments.
Trudo Lemmens
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Trudo Lemmens
2021-06-21 18:40
Chairs and members of the committee, I appreciate the invitation to present today as part of this parliamentary review.
In this polarized debate, where some frame all concerns about MAID as religion based, let me first firmly state that my approach is based on human rights and with respect for the equal rights and dignity of persons who are ill, elderly and disabled and with the recognition of the state's duty to protect against premature death, which is recognized in Carter. It's informed by decades of work on professional regulation, health governance, health and human rights, and end-of-life law.
A review of these new practices from a health governance perspective is laudable. Unfortunately, Parliament put the cart before the horse by expanding the law prior to a serious evaluation of our current practice. Imagine that we decide to allow a novel form of gene therapy for serious and untreatable conditions, but prior to undertaking a legislatively mandated, five-year, solid review of the risk-benefit ratio, we introduce it as a standard form of therapy largely available on demand.
I definitely have concerns about this review, particularly about the premise from which it will start. In any area of policy-making, it is hard to scale back a practice once there is an official, professed confidence in it. It is also hard to change behaviour and expectations once a procedure is promoted and normalized, and to design post-factum structures to uncover problems and to identify lacunae, particularly when a practice leaves so much flexibility and relies heavily on the integrity of professionals committed to the practice.
I urge the committee to take a step back and remember how the B.C. Supreme Court in Carter, which lies at the foundation of our current practice, stated—with references to choice, indeed, but also the best interest of the patient—that “if it is ever ethical...for a physician to assist in death, it would be only in limited and exceptional circumstances.... The concern about imposing stringent limits stems from the consensus that unlimited physician-assisted death would pose serious risks.”
The committee should be willing to question whether the current practice respects this and what even further expansion would mean. It should do more than review the statistical, largely self-reported data and the limited analyses that have been undertaken. It should take the time to listen to family members who have had bad experiences with the rushed MAID of loved ones and to people who are already struggling in our health care and social support systems, particularly during the pandemic, and for whom offers of MAID are often received as a threat to their well-being.
The committee should hear from Jonathan Marchand, a man with ALS, who complained before the Senate about his lack of health care choices; from the family members of Chris Gladders, who received MAID in shockingly dehumanizing, squalid circumstances; from Roger Foley, who was offered MAID instead of access to good care; from the family of Alan Nichols; and about other more recent cases that are emerging. It should take seriously the voices of people with disabilities who experience the explicit promotion of MAID as a confirmation that our society prioritizes ending their lives rather than providing adequate supports and care.
I urge you to be imaginative and ask how societal and legal endorsements of a broad MAID practice may already be impacting what we think our elderly and people with disabilities should do when they struggle and when solutions to their sufferings are complex and not immediately forthcoming. How will this impact how they think about what they should be doing when faced with old age, frailty and disability?
I urge you to keep in mind the challenging health issues that indigenous people and racialized Canadians disproportionately face, the revolting situation of many of our elderly in long-term care homes, exposed during the pandemic, and the lack of choices for the elderly and people with disabilities. Think about that when exploring the risks of normalizing MAID as therapy for suffering, when critically analyzing the premise in our MAID law that capacity and informed consent procedures are already providing sufficient protection against abuse.
Many of these concerns about the impact of ableism are particularly long-term, but I already have mentioned concrete examples of current concerns. How common are these? I suggest that we need more robust data.
The first Health Canada MAID report, however, should be a wake-up call. In addition to showing the normalization of MAID through the rapid uptake—particularly in some provinces—faster than, for example, in Belgium and the Netherlands, two countries with significantly more investment in palliative care and social support, the report confirms—
The Joint Chair (Hon. Yonah Martin): You have 30 seconds.
Dr. Trudo Lemmens: —some of the concerns with our already broader than strict end-of-life practices. It documents, for example, various factors associated with unbearable suffering that lie at the basis of the more than 15,000 MAID requests. It includes fear of being a burden to family, friends and caregivers in 34% of the cases and loneliness in 14% of the cases. For 53%, it's the loss of dignity, a concept profoundly influenced by ableist perceptions that our MAID practice may stimulate; and inadequate pain control or a fear of pain are cited in 54% of cases, reflecting a possible lack of access to adequate health care and palliative care—and even in some cases existential suffering.
In the question period—
View Michael Cooper Profile
CPC (AB)
Thank you again, Madam Co-Chair.
Dr. Lemmens, Dr. Romayne Gallagher, a palliative care physician and member of the faculty of medicine at the University of British Columbia, wrote a paper in which she argued that in many cases of MAID, it should be considered a medical error on the basis that the suffering that led to that request could have been alleviated with palliative care and other methods of support.
Having regard for the Health Canada report, and the table listing the 11 types of intolerable suffering, and the frequency of such suffering in the course of making a MAID request, would you care to comment on that?
Trudo Lemmens
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Trudo Lemmens
2021-06-21 18:59
Indeed, the Health Canada report and other studies that have been undertaken and are published in the peer-reviewed literature suggest that many people who are receiving MAID in Canada—it's not the majority, but still a substantial number of people—have not had access to adequate palliative care.
There are studies that are more positive. The Downar peer-reviewed study is the most positive about access to palliative care, but it does not discuss in detail what the quality of palliative care was or whether the palliative care offered was of sufficient quality.
The Health Canada report also suggests that 19% of people, for example, had access to palliative care only in the last two weeks before they received MAID. Another 19% actually received it only in the last month.
If you can speak to the palliative care specialists, as I'm sure you will, I'm pretty confident they will state that palliative care takes time. It takes time to offer alternatives to people.
The messages we get from the reports and from the data are not overwhelmingly, “Oh, we have a perfect situation here where people have access to perfect palliative care.”
We know from the data that palliative care is lacking in many Canadian provinces and adequate palliative care is lacking in many Canadian provinces, and that significant improvements can be made in that context.
Pamela Wallin
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Hon. Pamela Wallin
2021-06-21 19:16
Thank you.
Just to follow up on Senator Kutcher's note that anecdotes do not equal data, is there, in your mind, a serious number of MAID requests that have been put forward due to lack of access to palliative care?
Jocelyn Downie
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Jocelyn Downie
2021-06-21 19:17
There is absolutely not evidence of that. One thing that happens is when you request palliative care.... If you happen to be in a position where you haven't been offered palliative care before and you request MAID, one thing your clinician is legally required to raise with you is the option of palliative care. It's very important to know that, to recognize it. No, people are not doing that.
Pamela Wallin
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Hon. Pamela Wallin
2021-06-21 19:17
I want to just follow up on the whole question of privilege, from the other side of the coin, if you will. The concerns we hear are about lack of access depending on where people are. It may be regional, if you live in a rural setting as opposed to an urban setting. In fact, a number of people, certainly, have come to me personally. Again, that's anecdotal.
I would like to know what you know about lack of access for people requesting MAID.
Jocelyn Downie
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Jocelyn Downie
2021-06-21 19:18
The concern I have about lack of access is principally in relation to institutions that are not allowing MAID because they are religiously based or they are palliative care organizations that have taken the position that no MAID should happen within their walls. That is what I see as the problem. I didn't raise it, because that's a provincial jurisdictional issue, but it is a really serious concern.
The other thing I would note, and this goes to what you're concerned about, is that there are actually people who are disempowered. If they don't know about MAID or they don't feel like they have a lot of power, they aren't going to ask for it; whereas someone like me, someone like everybody on this panel, we're just going to say, “I want this.” You've been out there, saying that for advance requests. We feel empowered to ask and to advocate for ourselves and to access. I think there are people who are disempowered, who aren't getting access.
View René Arseneault Profile
Lib. (NB)
Thank you, Ms. Downie. I don't have much time left and I have a second question for you.
We're aware of the Carter decision. The justices unanimously tell us that a person seeking medical assistance in dying must have an incurable disease that causes physical or psychological suffering and for which they are not required to obtain medication or treatment.
The main argument of MAiD opponents is always that there is a lack of palliative care or that there are other options. How can this be reconciled with the Carter decision?
Jocelyn Downie
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Jocelyn Downie
2021-06-21 19:28
One of the things that Justice Smith noted in Carter v. Canada was that Gloria Taylor was offered palliative care and didn't want it. Gloria Taylor was at the heart of the Carter decision. Not everybody wants palliative care. Palliative care can't help everybody, but, that said, everybody should be offered palliative care.
These things go hand in glove. MAID and palliative care are not oppositional. They are part of the entire end-of-life care tool box.
View Geoff Regan Profile
Lib. (NS)
You're one of many examples of newcomers to Nova Scotia, the Atlantic region and Canada who have come here and have new eyes and good skills and have created economic activity benefiting their area. You're also, I think, benefiting by spreading peace and kindness.
I am pleased, as a former StFX student from a few years ago, to know that the StFX students not only can go to The Wheel to get their pizza still, but can also get some great treats from Peace By Chocolate, and I can get them all across the country in stores as well. That's wonderful.
Connie Newman
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Connie Newman
2021-06-17 15:54
Thank you, and thank you for the experience. This is very interesting.
I'm Connie Newman, executive director, as you're aware, of the Manitoba Association of Senior Centres' age-friendly Manitoba initiative. I work with a team of six older consultants as we connect with 60-plus member centres throughout the province and over 90 age-friendly communities throughout Manitoba.
Today I am a caregiver for three people whose homes are personal care homes—three different homes, three different residences. I'm fortunate; my three special friends—they're not family—all survived COVID. I have experience. I'm also one of many my age who are tech savvy, sort of.
I'm going to share with you a collection of thoughts, both my own and from others who I connect with on a regular basis.
Personal care homes are institutions. They are supposed to be homes. Why do they present as hospitals and/or institutions? Collectively, we must improve regulations, provincially as well as nationally. Regulations must be monitored. Funding transfers to the provinces must have standards attached.
For families with loved ones in personal care homes, challenges were heightened when in-person visits became impossible due to COVID-19 restrictions. There was, in some cases, almost total isolation from one another and periods with no visits. Visits were shorter, less frequent and with encumbered conversation connections.
Caregivers and volunteers pre-COVID provided much-needed support to their loved ones, family and friends. COVID hit, and that support was left to staff, who did not have the time to focus on the person as caregivers and volunteers did.
Now to community: 93% of older adults are living in the community, often known as aging in place. I became involved in the age-friendly concept early in my career. It takes an entire community to raise a child. I believe it takes an entire community to look after its own older adults.
In 2008 the World Health Organization told us to get ready for the change in population. It is 2021 today. We have more older adults than we have teenagers. There's a population shift. Many are living longer than ever, many of us healthy and trying to maintain our health. Many older adults do not have family in their communities. The community is a social connection. We all know that social participation is a determinant of one's own health, no matter what age. COVID hit, and we were not ready for the population shift. We sure were not ready for isolation.
I'm an age-friendly champion. In many daily connections, I am constantly involved with age-friendly domains: social participation, communication, housing, transportation, community health, building outdoor spaces and civic participation. When I think about them in a community in Canada, where there is an age-friendly focus, COVID was there. The community was working together for each other of all ages. When looking back at these domains, underlying COVID impacted seniors with transportation or a total lack of it. Programs for those aging in community—that's 93% of us—must be maintained, enhanced and encouraged.
In Manitoba we have support coordinators by community and district, who are tasked with connecting individually to older adults and assisting, where they can, in connecting them to services. During COVID they did their best in attempting to maintain some sort of connection. Zoom connections saved many where good Wi-Fi existed; 211 by phone became a lifesaver.
People with dementia and their caregivers are among the most valuable in our communities, and the COVID-19 pandemic has put those families at even greater risk.
Persons with dementia and caregivers were negatively impacted by the gap left by the suspension of formal programs. We have adult day programs that stopped running. Lower-income seniors living on their own or in congregate settings.... We need to ensure that their basic needs are being met—Maslow's hierarchy for those seniors.
On Internet access, who is responsible for ensuring equal access to the World Wide Web? Is it fair, if a person lives in a rural or remote area, that they do not have the same quality of access to information? Why is it that low-income housing in an urban setting does not have Wi-Fi access today? Devices are cheap. Training is a minimal cost. Wi-Fi for equal access must be an all-government focus.
We must continue to collaborate with the World Health Organization on the “Decade of Healthy Aging”. Since COVID hit, I have spent several mornings listening to those wise ones from all over the world. We must learn from each other. We know that COVID has impacted older women living in rural and remote areas, and the data today is impacted or under-reported. Many more are suffering mental health issues and more significant anxiety and depression from prolonged isolation. We're seeing now, today, a lot of hesitancy to get back and involved.
The opportunity for social connection and engagement is limited by going virtual. Many older adults have limited Wi-Fi access or may choose not to use it.
View Corey Tochor Profile
CPC (SK)
Thank you very much.
Thank you to our witnesses.
We were talking about the unfairness of some of the decisions about age 75, making the cut-off lower, or not having a cut-off for seniors, which I would agree with. It is unfair.
At the start of the pandemic, we knew that seniors were going to be the unfortunate target of this virus. After we turn the corner and in the years to come, we'll look back at some of the decisions we made. It's not about pointing fingers, but we should have bubble-wrapped our seniors. The seniors were the ones who were going to be affected the most by this virus. I don't think we've done enough for seniors.
Ms. Newman, you remind me of my mom, a lot. I appreciate your testimony so much, with your straight-shooter demeanour. I very much appreciate it. I'm from Saskatoon. I've spent a fair bit of time in Winnipeg. I'm a prairie boy, as well. Some of the struggles we have out here are probably very similar to those in Manitoba.
Can you expand a bit on your awareness of the differences in care during this pandemic in rural Manitoba versus in Winnipeg, where I believe you live?
Connie Newman
View Connie Newman Profile
Connie Newman
2021-06-17 16:31
There is a big difference. Between access to care in urban Winnipeg, Regina or Saskatoon versus access in rural areas, the difference is like night and day. That's why I'm a real proponent of our support coordinators, who are all over this province. We have more than 103 of them in various communities throughout the province. They're the go-to; they're the people who have a group of seniors, and because they're in rural Manitoba, everybody knows everybody else. They knew to go and check on Mrs. Smith, Mr. Jones, etc.
The biggest thing is, when we went into shutdown.... Home care has a set of rules. There are many people in rural and remote Manitoba who have no family. First, they were left in destitute situations, partly because nobody knew. Second, they were afraid, because they weren't all that healthy to begin with. How do they get to testing? How do they get to their vaccines? If it weren't for our support coordinators out there, I'm not sure that we would be where we are today with vaccinations. There's still a problem there, and I need to deal with it after I finish with this.
It goes back to communication and who knows what out there. To me, it's a big one.
View Corey Tochor Profile
CPC (SK)
You spoke about vaccines and that's the next thing you're turning to. I think it has been well documented that delaying second doses is prolonging the restrictions out there. Have you heard any stories from Manitoba on the deliveries of vaccines? We all get that it's delayed getting into Canada, but are there any creative programs running right now in Manitoba to get seniors vaccinated in rural or urban areas that you can share with the committee?
Connie Newman
View Connie Newman Profile
Connie Newman
2021-06-17 16:34
The short answer is no. I don't know that there are any creative programs, because what I hear is when people get into trouble. They will phone me and say, “Connie, what do I do about...?” or “Mrs. Smith is living in a.... How does she get to a vaccine site?” I communicate and I connect, so I know which button to push to solve that problem.
We all—including everybody on this line—need to understand that as we age, we become more isolated. Our friends pass away; we're disconnected; family is not there and we don't know who to call.
One of the friends I referred to has a son in New Zealand, so every now and then I get the phone call because his mother is in a personal care home. When you go to rural Manitoba, the need for community connection is huge. We know that if a small town in Manitoba is having a fair, everybody is there. Everybody knows each other.
That same thing happens across Canada. We haven't done fairs and events. My favourite, even in Winnipeg or if you go to rural Manitoba, is to ask, “Where are all the trucks?” All the trucks will be by the coffee shop, and that's where communication happens. That set of trucks takes care of everybody, and that is sadly missing. Here we go again: We don't have Wi-fi to connect those people when they can't connect themselves.
View Stéphane Lauzon Profile
Lib. (QC)
I see that the time is going by very quickly, and so would like to return to another subject.
Seniors were the focus of the programs that your organization supported. Have you noticed which services in particular, in the Quebec community you represent, were used most by seniors since the beginning of the pandemic?
Does your organization have trouble ensuring that services meet the needs of seniors and that it is easy for all of them to gain access?
How did the organizations you are familiar with ensure that the services were appropriate and accessible?
Serge Séguin
View Serge Séguin Profile
Serge Séguin
2021-06-17 17:00
Access to health care and social services was definitely difficult during the pandemic. It was hard to make a doctor's appointment. All kinds of minor and major operations that had been scheduled, such as hip replacements or knee problems, were postponed. Elderly people often have conditions like these. The specialists have been saying that delays in all of these operations are going to have a harmful impact on people's health.
View Adam van Koeverden Profile
Lib. (ON)
I thank the minister, Mr. Chair.
On June 2, the coroner's inquest into the death of Joyce Echaquan ended. Throughout the inquest, Canadians across the country learned new details about the mistreatment that Joyce Echaquan suffered shortly before her death.
What plans have been put in place to combat anti-indigenous racism in the health care system? What could the government do to ensure that the indigenous peoples, in particular indigenous women, have equitable access to health care?
View Marc Miller Profile
Lib. (QC)
I presume that all Canadians who were able attended the inquest or heard the reporting on those painful moments. This is what is experienced by many if not all indigenous people, who are apprehensive about a health care system that I consider to be first class, myself, but that has often treated them as second class or even third class persons.
During the coroner's inquest, we once again heard things about the reality of daily life for indigenous people who use the health care system, at a time when they are most vulnerable. I have been in almost daily contact with Joyce Echaquan's husband Carol Dubé, who is going through a very difficult time that he is facing with courage and strength. He and his family are still having some very hard times. As I said before, this is the reality experienced by some indigenous people who use the Canadian health care system, which is a jurisdiction jealously guarded by all provinces. That is the case everywhere in Canada.
My mandate is to put in place a law based on the distinctions, to combat anti-indigenous racism in the indigenous health care systems, in particular, but also to transform the system. Some elements have to operate at the same time. Obviously, this reform will be a lengthy and very difficult process, given the jurisdictional disputes that have existed in the past.
One thing that we announced in the budget was a $100 million fund in honour of Joyce Echaquan to combat racism in the health care system directly. I want to stress that this racism exists everywhere in Canada.
View Kerry-Lynne Findlay Profile
CPC (BC)
Thank you, Madam Chair.
This is for the Department of Health, for either Ms. Hoffman or Ms. Lemaire.
I certainly thank you all for being here today on rather short notice. We don't have a lot of time, but I do want to say that this review is long overdue. Bill C-14 called for a statutory review in June of 2020, and in the interim we have, instead, had an expanded MAID regime. The state of palliative care was supposed to be examined in the Bill C-14 review, so I'd like to start there.
The first annual report on MAID in Canada said that while many recipients of MAID had received some sort of palliative care, “it does not speak to the adequacy of the services offered. This may be an area for future study.”
I think that's part of what we're doing here.
Where are we on reviewing the quality of palliative care MAID recipients were offered or experienced? Also, do we have any way of knowing if any Canadians have chosen to end their lives through MAID because of a lack of quality palliative care or resources more generally?
Abby Hoffman
View Abby Hoffman Profile
Abby Hoffman
2021-06-07 19:46
Maybe, Ms. Findlay, I'll start and my colleague Ms. Lemaire may want to jump in here.
I think we will freely admit that just as we wrote in last year's report, there is only so much information we are able to gather through these reports that come from providers, which basically ask whether a person accessed palliative care and, if they didn't, whether they would have had access to it if they so wished.
We do know that some of the providers reported that for people who had palliative care and who chose to proceed with their assisted death in any event, the palliative care was not sufficient for them to get relief from their suffering or from the decline in capability and capacity that they were facing.
To be perfectly candid, I don't think we are in a position to really and truly say that we know, qualitatively speaking, what the nature of that palliative care is in each particular case. We are relying on the reports from those providing commentary to us about access to palliative care.
I think the work this committee will do, frankly, will be very welcome, but we are not aware of cases in which someone has said, “I don't have access to palliative care,” or “The palliative care realistically could be better and the consequence of that is that I am proceeding with my decision to end my life through a MAID procedure.”
View Kerry-Lynne Findlay Profile
CPC (BC)
Would you agree with me that there are differences and discrepancies across the provinces and territories in terms of the availability and quality of care? From the reports you're getting, they are not all offering exactly the same amount or in the same areas.
Abby Hoffman
View Abby Hoffman Profile
Abby Hoffman
2021-06-07 19:48
I think one could go further to say that even within the same community, different institutions and different hospitals may offer different levels of palliative care. We know that some institutions have well-established palliative care and end-of-life services and are well known because of these, while others may be better known for other things.
I would say it's not even a question of pan-Canadian variability. It could be within any given jurisdiction or within any given community for that matter.
This is one of the things we're trying to address through the funding to provinces and territories for an array of home care, palliative care and end-of-life care services, but we all acknowledge that there is a long way to go.
Jacquie Lemaire
View Jacquie Lemaire Profile
Jacquie Lemaire
2021-06-07 19:49
Yes. Thank you.
The only other thing I would add to what Abby said is that there was some initial research done. What comes to mind is research by Dr. James Downar, who's a palliative care physician and also a MAID provider, using administrative data in Ontario. It compared the socio-economic characteristics of decedents who received MAID to all decedents in Ontario, and from that initial research, in terms of comparing their use of palliative care services, between the two, there wasn't any difference.
Their initial findings were that there is not a difference in terms of access to palliative care services for people who receive MAID versus those who don't. Of course, that's just some research, and certainly more is required.
Stanley Kutcher
View Stanley Kutcher Profile
Hon. Stanley Kutcher
2021-06-07 20:09
Thank you very much for that.
I have a question on the palliative care.
You mentioned that there were great discrepancies across some centres on how palliative care is delivered. In your experience and to your knowledge of Canada's health care system, is that discrepancy similar to or vastly different from other types of health care interventions that are available across the country?
Abby Hoffman
View Abby Hoffman Profile
Abby Hoffman
2021-06-07 20:09
Briefly, inasmuch as palliative care is relatively newer, it might be somewhat dissimilar. On the other hand, if you think about our health care institutions, many of them specialize in certain aspects of health and disease, chronic or acute disease. I think there may be wider discrepancies now, but they are, over time, narrowing as palliative care takes on a much more legitimate and fulsome place in the array of health care services in Canada.
Michael Nelson
View Michael Nelson Profile
Michael Nelson
2021-06-07 11:03
Thank you very much, Mr. Chair.
Good morning. Thank you to all the members of the House of Commons Standing Committee on Health, in particular Luc Thériault, the member for Montcalm, for the opportunity to present on behalf of the Canadian Association of Optometrists.
My name is Dr. Michael Nelson and I'm the president of the association. I'm also a practising optometrist in Winnipeg, Manitoba, and I'm joined by François Couillard, our CEO, and Laurèl Craib-Laurin, our senior manager of government and stakeholder relations.
The Canadian Association of Optometrists represents over 5,400 optometrists who serve as Canada's primary eye care doctors. Our experience during the COVID-19 pandemic has been to have an increase in patients complaining of a variety of vision problems. Canadians are realizing the importance of their vision and that they should not be taking it for granted. Optometrists are seeing higher rates of eye fatigue, increased incidence of dry eye disease and a growing rate of myopia. Conditions like diabetic retinopathy, which can lead to vision loss, have worsened as some Canadians have chosen to delay their routine eye exams.
The growing myopia rate is especially alarming for optometrists and should raise a flag for government. Last year, the World Health Organization's inaugural world report on vision included some startling findings. Listen to this: The rate of myopia is expected to rise from 28% in 2010 to 50% by 2050. This is very alarming as myopia increases the risk of glaucoma, retinal detachment and vision loss in adults. While heredity plays a large part in myopia, it is further exacerbated by what we have seen through the COVID-19 pandemic with more and more near and close time and not enough outdoor time. This is especially worrisome for children because of the increased screen time for school and recreational activities.
For those living with diabetic retinopathy, a condition that is particularly predominant in indigenous populations, the problems of accessing care during the pandemic have resulted in worsening eye health.
François Couillard
View François Couillard Profile
François Couillard
2021-06-07 11:05
There are some high-level policy issues regarding eye health that deserve the attention of the federal government, as they have major implications not only for the health of Canadians, but also for the economy and productivity of our nation.
A Deloitte Access Economics research paper released last month estimates the total cost of vision loss in Canada was $15.6 billion in 2019. That was before the COVID‑19 pandemic.
The lack of a coordinated primary health care system for eye health was particularly evident during the COVID‑19 pandemic, which significantly reduced the ability of optometrists to provide care to Canadians. Vision problems affect the majority of Canadians, with six out of 10 Canadians reporting having had a vision problem. Every year, nearly one million Canadians miss work or school, or have their performance affected by vision problems.
We would like to encourage the Standing Committee on Health to conduct a study on vision, once this pandemic is over.
For whatever reason, Canada's many health care systems do not recognize that our eyes deserve the same level of care as other parts of the body. There is an urgent need to prioritize eye health and access to appropriate vision care for all populations.
We have the opportunity to make eye health and vision care an integral part of health care delivery from birth. Seventy-five per cent of vision loss can be treated or prevented, which means that early detection and treatment can improve population health and help avoid more costly future interventions and treatments.
Thank you very much for your attention.
Steven Morgan
View Steven Morgan Profile
Steven Morgan
2021-06-04 13:19
Thank you very much. I appreciate the opportunity to speak to you today.
By way of introduction, I am an economist by training, and I am a full professor of health policy at the University of British Columbia. I think it's important to note, for instance, that I've published over 150 peer-reviewed research papers on pharmaceutical policy. I've won literally millions of dollars in peer-reviewed research grants in Canada and the United States. I have served as an expert on expert advisory committees concerning matters related to pharmaceutical pricing and access for the World Health Organization and the OECD.
I'll keep my opening remarks very brief, as I prefer to use the available time to help fill knowledge gaps that you might have identified as important to your work.
I will start by expressing my support for reforms to our patented medicine price regulations. The old regulations were never designed to provide significant protection against high prices in Canada. They were designed on the false premise that, if Canada paid about the same amount for pharmaceuticals as countries with high levels of pharmaceutical R and D, then Canada would also become a country with high levels of pharmaceutical R and D.
That was never going to happen, and, sure enough, it didn’t. As I wrote during the 10-year review of the PMPRB in 1997, there was much to fix in the regulations from their outset, but the need for regulatory reforms has become even greater in recent years.
Two trends are important here. First, the pricing of pharmaceuticals has become entirely secretive worldwide. Drugs are priced like cars at a dealership. There is the list price, which everyone knows is higher than anyone should really pay, and then there is the actual price, negotiated in secrecy between the seller and each individual buyer.
Paradoxically, it was the widespread use of international reference pricing regulations that was the main reason that secrecy has now become the norm in pharmaceutical pricing. That is, so many countries were using international comparisons of list prices to determine the maximum prices that should be charged within their countries that manufacturers decided to go with confidential prices and confidential price negotiations as a means by which they could charge the most they possibly could in every market. In order to do that, they had to inflate, that is, to raise, list prices in every market. The benchmarking of list prices to international comparisons is now the norm, and, frankly, it is no longer enough.
This brings up the second reason for regulatory modernization. That is the excessive prices that are now frequently asked for for many medicines, especially for medicines that are specialized drugs for treating serious conditions. Excessive patented drug prices are indeed possible, because patents give manufacturers temporary monopolies over the sale of particular medicines.
The potential for abuse of the resulting market power is high, because consumers of patented medicines, also known as “patients with medical needs”, can suffer and might even die if they are unable to afford a treatment. By legally limiting the net-of-confidential-rebate prices that a manufacturer can even ask the Canadian health care system to pay, new patented drug price regulations could prevent the worst cases of excessive pricing and, at the same time, speed up negotiations over final prices and the terms of coverage for Canadians. Patients would get the medicines they need more quickly, and our health care system, ideally a system with universal pharmacare incorporated within it, would likely be able to afford to cover more of those medicines.
Industry will oppose these reforms, and they will provide funding to patient groups willing to oppose the reforms, too, but that doesn’t mean the regulations are wrong. If anything, it means that, unlike the original 1987 versions of the PMPRB regulations, the proposed reforms might actually work.
Thank you. I look forward to any questions you have.
Sharon Batt
View Sharon Batt Profile
Sharon Batt
2021-06-04 13:31
Thank you, Mr. Chairman and committee members, for inviting us to present at these hearings.
Thirty years ago, four of us started Canada's first breast cancer advocacy group because we believed in the potential of these groups to support and promote the needs of patients. Unfortunately, in the mid-1990s the government withdrew funding from patient groups, and many turned to the pharmaceutical industry for support.
For the past 20 years, I have researched these partnerships, as have many others. A large body of evidence now exists to show they compromise the potential of groups to inform drug policy. The research shows that through financial support and social relationships the industry has captured a large segment of the global patient advocacy movement. By “captured”, I mean that these patient groups express a consistent narrative that aligns with industry interests. We now have two discourses on drug prices within the patient advocacy movement. This difference is starkly evident in the organizations that have intervened about the PMPRB regulations and guidelines.
We believe the new PMPRB regulations and the proposed guidelines will be effective tools to cap the constant upward spiral of drug prices that prevents increasing numbers of patients from gaining access to needed drugs. Excessively high prices distort the allocation of health resources. They threaten the sustainability of health care systems on which all patients depend. At issue in these guidelines are the rules that determine whether many Canadians can afford to pay for their prescription drugs.
Many reports over many decades have recognized that an effective universal health care plan must cover essential drugs, and recent polls show that 86% of Canadians support a national pharmacare plan. We are alarmed by the extent of opposition to the PMPRB by pharma-funded patient groups. Their voices are completely out of proportion to those of the independent patient groups, groups that work with low-income people and other civil society groups that support a national entirely public pharmacare program.
When the PMPRB revised and weakened the first version of its guidelines, we were dismayed. Was this pullback based on evidence or on the intense lobbying by the industry and patient advocacy groups? Drug policy analysts in all countries recognize that the pharmaceutical industry is pricing new drugs at whatever the market will bear. Many of these expensive drugs do not improve patients' survival or their quality of life. Some have been recalled because of the level of harm to patients.
Patient advocacy groups have a responsibility to press for reforms that will limit these harms to patients and threats to our health system. This is hard if you're in a partnership relationship with an industry that benefits from high prices. This is why Breast Cancer Action Quebec will not accept any funding from pharmaceutical companies, nor does any of the groups or advocates with whom we collaborate.
Canada needs transparency laws that will allow the public to examine the relationships the industry has cultivated with patient groups. We do know these relationships are extensive, not only in Canada but in all high-income countries. The industry strategies used to cultivate patient advocates, including paying for dinners, media training and unrestricted educational grants, have been used for decades to cultivate physicians. They work. They may even be more effective with patients than they are with physicians, given the vulnerability of patients and their more limited resources.
The new cystic fibrosis drug Trikafta and its precursor drugs are a flashpoint for much of the anger directed to the PMPRB. From the evidence we've seen, these new CF drugs are that rare product: a breakthrough treatment. We want Canadian CF patients to have them, but simply being an effective drug doesn't justify price gouging. Drugs are supposed to work. Otis Webb Brawley, the former chief medical officer of the American Cancer Society, argues that “patient groups get money from the drug and device companies because they...[make] claims so outrageous that even special interests dare not make them”. Some of the claims that cystic fibrosis and rare disease patients are making about the PMPRB fit that description. I refer to tweets like, “@DougPMPRB You are promoting the death and suffering of Canadian citizens and the blood is on your hands.” I also refer to the emotionally charged images in the ad series, “Stop changes to the PMPRB regulations”, which was sponsored by 13 patient organizations called “Protect Our Access”.
The PMPRB didn't block Vertex from bringing Trikafta to companies sooner; that was the company's decision. Notably, patient advocacy groups in other countries have challenged Vertex directly, as they should, and not their cash-strapped public health programs.
Patient charities supported by the pharmaceutical companies often develop financial assistance programs to help patients pay for the excessively high-priced drugs. This doesn't solve the problem of patient access to high-cost drugs. It serves to maintain an unsustainable drug pricing system that is enormously profitable to pharmaceutical companies. It keeps drug prices high.
In conclusion, partnerships between pharmaceutical companies and patient organizations contribute in myriad ways to inflate drug prices and to skew patients' advocacy in favour of the industry. Canada needs a national, publicly funded drug plan and policies to support it.
Breast Cancer Action Quebec recommends that the new PMPRB guidelines go into effect on July 1, 2021.
I thank you. Jennifer and I are happy to answer any questions.
View Don Davies Profile
NDP (BC)
Thank you.
I understand the order of priority is that the United States pays the highest; I think Switzerland is second highest; and Germany or Canada, third highest.
Of the countries that pay lower costs—I guess there are 210 countries in the world—do the Belgiums, Frances, New Zealands and so on have less access to medicine than Canada does?
Steven Morgan
View Steven Morgan Profile
Steven Morgan
2021-06-04 14:06
That's a great question. People throw out these statistics and these stories, frankly, about drugs that don't come to market in Canada. The fact is that drugs go to market in a few places in the world in very large numbers, and then in other markets around the world, they go to market basically on the basis of whether the drug is truly a breakthrough that will earn market share. In places such as Germany and the United States, the legislation of those countries is set up to give manufacturers every incentive to bring anything to market, regardless of how clinically promising it is, but ones that are clinically promising end up in markets around the world.
The literature on this, which I recently did a systematic review on, is quite poor internationally because most of it is funded by pharmaceutical manufacturers. As a consequence, most of that literature has what we call a commercial bias, a bias that says that any drug in any market at any price is a good thing. The reality is that it's effective drugs that countries want, and effective drugs get to every market of the world.
View Don Davies Profile
NDP (BC)
Dr. Morgan, I really want a direct answer, if I could, because there seems to be a thesis developing that if we go through with these PMPRB reforms and they reduce the price of drugs, Canadians won't get access to those drugs.
I'm asking in a real world environment, where there are many countries that already pay less for drugs than Canada does, are they getting worse access to drugs than Canada is?
Steven Morgan
View Steven Morgan Profile
Steven Morgan
2021-06-04 14:07
No. One only needs to look at, for instance, the United Kingdom, a country that pays less than us, gets more medicines on its market and actually has higher research and development in the pharmaceutical sector, so there you go.
View Tony Van Bynen Profile
Lib. (ON)
Thank you, Mr. Chair. Thank you to this panel for joining us today.
I think that all of us can agree that this is a very important discussion. I appreciate everyone's taking the time to join us.
My questions will be directed to Dr. Morgan.
Canadians have access to some of the best doctors and nurses, hospitals and treatments in the world, all of that through our publicly funded health care systems. This includes the incredible team at Southlake Regional Health Centre, where I had the pleasure to volunteer as a board member for many years and to gain some insight into the health care sector.
We've learned that some Canadians, particularly those with rare diseases, have difficulty affording the medications they need. Budget 2021 reaffirmed that the government will proceed with its announced plan to provide ongoing funding of $550 million for the program for high-cost drugs for rare diseases. How do you think this investment will help Canadians currently living with rare diseases now and in the future?
Steven Morgan
View Steven Morgan Profile
Steven Morgan
2021-06-04 14:19
Thanks. That's a great question.
There are a few things under way. The federal government is consulting to try to develop something of an actual strategy around rare diseases. Canada has lacked that to date. I think that's very promising. There's funding for the medicines when patients need them, but there are also the various mechanisms that need to be put in place for the assessment of medicines as they come to market, and to support both manufacturers and patients in navigating often complex and uncertain information about whether the medicines are going to work or not.
The $500 million that's dedicated towards helping provinces pay for expensive drugs for rare diseases is an important step in the process of developing a truly comprehensive national pharmacare program. For patients with rare diseases, I think it's a clear signal that they will not be left behind by a pharmacare program that is designed to cover all of the medicines Canadians need. I know there was a lot of fear at the outset of discussions about national pharmacare that patients with rare diseases would become the second or third in line after the patients with more common conditions like diabetes, asthma and other such things.
View Tony Van Bynen Profile
Lib. (ON)
I'm looking at an article entitled “Pricing of pharmaceuticals is becoming a major challenge for health systems”. In that article it is said that “The pharmaceutical sector can potentially abuse market power because of the inelasticity of demand for necessary medicines.” Can you expand on that, please?
Steven Morgan
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Steven Morgan
2021-06-04 14:21
Yes, absolutely. The idea of having a patent as a mechanism for incentivizing research and development typically comes from markets where the price that a consumer is willing to pay is based on the idea that the consumer can always walk away from a transaction on a voluntary basis and not be harmed unduly by doing so. Unfortunately, in the context of necessary medicines, particularly for serious diseases, patients can't walk away. As a consequence, patients and their families would pay virtually anything for effective life-saving treatments. As a consequence, patients and their families and their organizations would try to convince governments to pay anything for effective life-saving treatments. This gives patent holders in the pharmaceutical market very unique market power, which the patent system really wasn't designed to provide. That's why safeguards like PMPRB regulations are a useful tool to make sure that there's incentive for innovation, but not an opportunity to abuse the market power of the patent.
View Tony Van Bynen Profile
Lib. (ON)
Thank you.
One conversation we're hearing lately is about patents in relation to the COVID-19 vaccine. I'm curious to hear your thoughts about the patent process in relation to pharmaceutical drugs. Can you identify any areas where Canada could improve or further encourage pharmaceutical companies to develop their drugs in Canada?
Steven Morgan
View Steven Morgan Profile
Steven Morgan
2021-06-04 14:23
If you want an innovation strategy on R and D in the pharmaceutical sector, you have to improve the productivity of the R and D itself. Manufacturers locate their research and development investments based on science. If you want good scientific research conducted in Canada, invest in Canadian science, invest in data platforms, invest in clinical trial networks, those kinds of things.
Paying higher prices isn't necessary to attract R and D, and countries like the United Kingdom prove that. You can actually have effectively managed drug budgets and significant pharmaceutical investment. Focus on science. Put the investments into the scientific enterprise in Canada. That's where you're going to get your best return on innovation policy.
View Tom Kmiec Profile
CPC (AB)
Thank you for that. I have one last question.
Obviously, you're talking to other patient advocacy groups in the lead-up to the implementation of these regulations on July 1. Should that come about? Should the government not delay it further or maybe stay them, like you asked them to do, to conduct an investigation of the PMPRB?
What will you do in the six months afterward to advocate on behalf of the families who are affected by cystic fibrosis? Do you trust the PMPRB to conduct the implementation?
Kelly Grover
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Kelly Grover
2021-06-04 14:30
I am going to answer the last question and come back.
We don't trust the PMPRB for the implementation. They are doing consultations on the evaluation right now. None of us knew about it, because it was promoted on Twitter, and we're not on Twitter all the time, so that was a bit of a problem.
As for what are we doing to do, honestly, we only have so much time and so much energy, and so does this community. We need to get Trikafta into the hands of people who live with this disease. That is not going to be through the PMPRB now, so we have to turn our attention over to our provincial partners and hopefully see this drug funded. We are concerned about the future of cystic fibrosis drugs at this time, but, as I said, we're going to keep our eye on it.
Also, Dr. Morgan spoke about the rare disease framework. Obviously, we are interested in that as well.
There's only so much time and energy. The priority is getting this drug here now.
View Marcus Powlowski Profile
Lib. (ON)
First, let me start by saying that nobody should ever question the integrity of parents of sick children in doing what they're doing. Certainly, I don't think anybody is lying. I think, however, there might be some disagreement as to how to best help Canadians, including Canadians with cystic fibrosis. In passing, I would note that one of my kids' best friends has cystic fibrosis and certainly would like access to Trikafta.
I have a question for Ms. Grover. Hopefully she can be fairly brief. Vertex was refusing for a long time to ask Health Canada for approval for Trikafta. I know Cystic Fibrosis Canada has been advocating and lobbying for these changes to the PMPRB to be withdrawn. Has Vertex at any time asked Cystic Fibrosis Canada to lobby the government on this issue?
View Marcus Powlowski Profile
Lib. (ON)
Have they told Cystic Fibrosis Canada that the reason they weren't asking for approval from Health Canada was a result of the proposed changes to PMPRB, and that unless those changes were withdrawn, they wouldn't submit the drug for approval?
Kelly Grover
View Kelly Grover Profile
Kelly Grover
2021-06-04 14:33
They didn't tell us that, but it was said publicly.
View Don Davies Profile
NDP (BC)
Thank you.
When we undertook the study, the analysts from the Library of Parliament told us this about the PMPRB:
...an independent quasi-judicial body whose mandate is to regulate the prices of patented prescription and non-prescription medicines to ensure that the prices are not “excessive“ during [the] period of market exclusivity. It does not have a mandate to set the prices of patented medecines [sic] sold in Canada.
Dr. Batt, in a joint written submission to the committee, you said:
When independent stakeholders and industry representatives hold “divergent and even diametrically opposing points of view,” the PMPRB’s responsibility is not to strike a “balance” between the demands of industry and policies that serve the public interest. The PMPRB’s role is to come down firmly on the side of the public. It is not to protect the payers... and it is definitely not to make concessions to an industry that is far too powerful.
I wonder if you can expand on what you think the role of the PMPRB should be.
Sharon Batt
View Sharon Batt Profile
Sharon Batt
2021-06-04 14:42
I see the PMPRB as a consumer protection organization. I have worked for a consumer protection organization in Quebec, where I was one of the editors of their consumer protection magazine. The concept of a consumer protection organization is that industry is very powerful and that individual citizens are not particularly powerful, and they need the government to step in and take their side when there is a contest between a powerful industry and the public interest.
Pamela Fralick
View Pamela Fralick Profile
Pamela Fralick
2021-06-04 14:46
Mr. Chair and honourable members, thank you for the opportunity to present today. I'm joined, as you've just heard, by Declan Hamill, our vice-president for policy, regulatory and legal affairs.
We are here on behalf of Innovative Medicines Canada, which represents 47 member companies from the innovative medicines and life sciences sectors. The pandemic continues to underscore the importance of innovative medicines to the health of Canadians. Most importantly, it is demonstrating why timely access to innovative treatments and vaccines is so critical.
It's also one of the reasons we are calling on the government to suspend for the duration of the pandemic the implementation of the Patented Medicine Prices Review Board's regulatory changes, which are set to come into force on July 1.
The government has previously cited COVID-19 as a primary reason for delaying the implementation of the PMPRB's regulatory changes. I think we can all agree that the same rationale applies today. More importantly, delaying these regulatory changes will also ensure that we all have the time needed to re-evaluate the desired policy outcomes, the effectiveness of the consultation process and the premise on which the PMPRB's new regulations were developed.
Since the changes were first proposed, there has been a strong consensus among industry representatives and many stakeholders that the consultation activities were not intended to inform decision-making. From initial steps, which included a 2018-19 steering committee and working group, through to later stages, many points of concern were raised and disregarded.
The lack of meaningful engagement led industry to undertake serious actions, including two Federal Court legal proceedings and a constitutional challenge in Quebec. Most recently, in its submission to the Quebec Court of Appeal, the Attorney General of Quebec submitted that the proposed PMPRB changes infringe on provincial jurisdiction and that therefore all the regulatory changes should be disallowed.
Providing the appropriate time and process to consider any PMPRB regulatory changes will also ensure that any decisions are based on accurate understanding of where Canada stands regarding the price of medications compared to those in other key countries. Contrary to PMPRB's assertions, Canadian drug prices are in the middle of the current list of those of comparative countries, not at the top.
Overall, median international prices were 16% higher than Canadian prices. Increases in the annual Canadian price of patented medicines have been on average less than the rate of inflation as measured by the consumer price index.
Further review will also demonstrate that the price of innovative medicines is not the primary cost driver for Canadian public and private drug plans as PMPRB claims. Rather, increased drug use by Canada's aging population and the related growth in chronic diseases are the primary cost drivers, not the price of medicines. Although the need for Canadians to have access to the most innovative medicines and vaccines is clear, the PMPRB regulatory changes will impact the market incentives that encourage early access availability in Canada.
Information obtained through an access to information request shows that PMPRB's analysis concludes that prices for certain medicines will drop between 90% and 99%. There is a point at which price reductions make it not commercially reasonable for companies to introduce drugs for approval in Canada or alternatively that they will be introduced significantly later. This is already an issue in Canada.
Independent data sources show that Canadians have access to only 48% of all new medicines launched globally, which means we are behind countries like the U.K., Germany, Japan, and France. This gap in access will increase if the proposed PMPRB changes proceed.
Additional time to consider PMPRB regulatory changes will also provide an opportunity to reflect on the true breadth of the Canadian biopharmaceutical sector's economic contributions. According to a recent report from Statistics Canada, the sector generates almost $15 billion in economic activity and $2 billion annually in R and D spending. Calculations based on this data put the industry's ratio of R and D to sales ratio at 8.8%, which is more than twice that reported by PMPRB, which uses a 1987 definition of research and development.
To be clear, our industry is not opposed to modernizing PMPRB, but we believe it can be done in a way that maintains patient access to new treatments and medications, builds on Canada's talent and expertise, and attracts international investment.
A vibrant life sciences sector in Canada starts with clear and balanced policy objectives. We believe a whole-of-government approach involving Health Canada, Innovation Science and Economic Development, Finance and International Trade is essential. It also includes fair and accurate reporting on patented medicine pricing, on understanding the real cost drivers to the system and prioritizing the value of saving lives.
IMC and our international counterparts remain committed to working with the federal government and all stakeholders. Our global CEOs have reached out to the Prime Minister on several occasions over the past three years, hoping to engage in collegial and collaborative dialogue, and to this day remain keen to develop a productive working relationship.
Thank you for this opportunity to speak with you today. I respectfully request that the committee recommend that the government delay the implementation of the PMPRB’s regulatory changes.
We look forward to answering your questions.
View Marcus Powlowski Profile
Lib. (ON)
What would you suggest in response to Ms. Little's point about the price that the drug company is asking for the treatment of her daughter's cystinosis? The system would seem to have failed if they're asking for $100,000 and there's nothing we can do about it.
If, for example, Vertex is not bringing the drug to market, does that not suggest to you that the present system is failing?
Christopher McCabe
View Christopher McCabe Profile
Christopher McCabe
2021-06-04 15:16
I would say that both of those are credible examples of the system failing, and the government should take seriously its responsibilities to its citizens and certainly entertain the use of it.
The U.K. government did entertain the use of its rights around a very expensive breast cancer drug, which helped to trigger a negotiation that otherwise might well not have happened. These tools are there for a reason and are used sparingly but effectively, and I wouldn't criticize anyone who used them in both of the cases you identified.
View Luc Thériault Profile
BQ (QC)
View Luc Thériault Profile
2021-06-04 15:20
Thank you, Mr. Chair.
We have a situation where people are claiming that we need to implement the reforms as they stand and that the pharmaceutical companies are indeed bluffing. They believe that the drug companies are not going to leave, that clinical trials are going to continue and that patients will face no consequences, even though we have no innovation strategy, even though we separate health from innovation and from research and development, and even though we have no really effective rare disease strategy in place. Some people feel that there will be no impact. Some people feel there are risks.
Ms. Fralick, I'd like to know what Canada represents in the global market. We can always target Vertex, but if it simply didn't start clinical trials here, we would have access to those drugs six to eight years down the road, right?
No one is going to be able to single out anyone, because it's a global free market. Am I mistaken?
View Luc Thériault Profile
BQ (QC)
View Luc Thériault Profile
2021-06-04 15:22
Mr. Chair, can we start over? I will quickly repeat my question.
What weight does Canada carry on the global market?
Can we really believe that companies are bluffing when they say there will be fewer clinical trials?
Pamela Fralick
View Pamela Fralick Profile
Pamela Fralick
2021-06-04 15:23
There are many elements to your question. We already lag behind our international peers in terms of the numbers of new products launched. This would be my first point. It's critical that the PMPRB does not further erode Canada's status in that global market.
At the moment, Canadians only have access to 48% of all new medicines launched globally. That compares with 64% in Germany and 60% in the U.K. We've talked about that before and there is, of course, more in the U.S. Only 25% of all medicines are available in Canada within the first year of international launch compared with a higher percentage in Germany, the U.K. and the U.S.
There is also a time lag that has been referred to. I'll include that in my comments because you're asking about the international status of Canada. Canadians wait an average of 17 months from the first international launch, whereas medicines are available far sooner in other countries—for example, 11 months in Germany, 12 months in the U.K. and four months in the U.S., so we're already at a disadvantage.
You asked specifically about clinical trials, but if there's time, I'll add a bit more. The industry, first of all, is extremely important to Canada in its support of clinical trials. Between 65% and 75% of clinical trials initiated in Canada in every quarter since 2015 have sponsored by industry.
According to the data we have been collecting, there's been a decrease of about 20%, compared with the previous three years, in clinical trials being launched in this country. Some of that might be due to COVID. I know that someone raised that point, but we're looking at data across quite a period of time.
I have other data points on impact, but I will stop there in deference to your question.
View Don Davies Profile
NDP (BC)
Thank you.
Ms. Little, first of all, thank you for sharing your very personal experience, and best wishes to your daughter.
You made reference to the fact that the molecules involved in the medicine that helps your daughter were discovered in the 1950s, and if I understand correctly, all that changes is that a pharmaceutical company takes the same molecule, changes the delivery system and charges, if I may say, an outrageously expanded amount of money for it.
Can you explain that in detail to us?
Erin Little
View Erin Little Profile
Erin Little
2021-06-04 15:28
Yes.
The active ingredient, cysteamine, is in all four of the products that I previously talked about. With cysteamine, the hardest part of almost any treatment, if you ask any patient, is the side effects. The side effects of cysteamine are from all drugs. When they took Cystagon and turned it into Procysbi.... Cystagon has to be given every four hours and Procysbi has to be given every two hours.
I wholeheartedly support this drug being here in Canada and Canadians having access to it. If Olivia were a 26-year-old woman managing a relationship and career, of course I would want her to have a drug that makes compliance easier. The problem is that all of the side effects are still the same: gastro upset, making patients smell, loss of or poor appetite, gas, bloating...just horrendous things that nobody wants to deal with.
The difference between Cystagon and the Procysbi was that they enteric-coated the latter, so it releases differently. Is it worth that? That's not for me to decide, but a drug—an active ingredient—that's been around for decades and was first introduced as a treatment in 1994 for patients...I find it unjustifiable and with the—
View Don Davies Profile
NDP (BC)
Erin Little
View Erin Little Profile
Erin Little
2021-06-04 15:29
The drug is based on weight, I just have to point out. There is the two-year-old who takes Procysbi for $56,000 a year versus Olivia who takes Cystagon at $18,000 a year. If Olivia were on Procysbi, she would have to take a higher dose, which would result in more money.
The compounded eye drops that have been safe, effective and on the market for years are $3,000 a year. The new drops are $120,000 a year. Again, they do offer easier compliance, but the drug is the same.
View Don Davies Profile
NDP (BC)
No, that's good.
I'm going to spend a bit of time on the last one, because I think Trikafta is a very interesting example of this. I think every single Parliamentarian wants every single Canadian who needs Trikafta to get access to it, and that's not happening today.
Here's a brief history of it. We know that it was a research team at the Hospital for Sick Children at the University of Toronto that discovered a CF gene in the 1980s. It was the Canadian Cystic Fibrosis Foundation and clinics that identified almost all of the research subjects from families in Canada. They donated blood samples. The Canadian Cystic Fibrosis Foundation and the Canadian Institutes of Health Research supported the research. CFF gave $150 million to Vertex in 2000 to do the research.
When the company finally launched the precursor to that, Kalydeco, they priced it at $294,000 annually for two pills a day. Twenty-nine researchers contacted them; they wrote Vertex's CEO to express their dismay and disappointment that this successful drug was diminished by this “unconscionable price”, in their words.
Aidan Hollis, whom you reference, studied Vertex's pricing for Kalydeco and Orkami—a precursor as well to Trikafta—estimates that the company's profits from the two drugs will be $21.1 billion. He concludes that the high prices are not justified by costs or the need to support the innovation. The price seems more designed to reward shareholders.
My question is, what can we do to get Trikafta into the hands of Canadians? Is it time that the Canadian government used compulsory licensing? If this company won't apply to Health Canada to make this drug available, should we exercise our right to compulsory license that drug? Finally, how many times has the Canadian government used compulsory licensing?
Christopher McCabe
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Christopher McCabe
2021-06-04 15:34
I don't know how many times the Canadian government has used compulsory licensing.
I think the magnitude of benefit of Trikafta to the Canadian CF population is so large that it would be legitimate for the government to consider using its compulsory licensing power if Vertex persists with not bringing it to Canada.
Again, I would hope that would not happen, because it would be a failure of the system.
View Jennifer O'Connell Profile
Lib. (ON)
Thank you, Chair.
Thank you to all the witnesses for appearing.
Ms. Little, thank you for your testimony and for sharing your daughter's story. You spoke toward the end of your opening statement about—forgive me for paraphrasing, but it stuck with me—how at first you thought about your daughter accessing these drugs to save her life and, as she gets older, how you worry about whether she can afford to sustain these life-saving medicines. That's the piece that I think a lot about when we're having this conversation.
It's this issue of whether drugs will come here, but I often wonder, even if the drugs come here with outrageous prices, how does that make them any more accessible for the average Canadian, unless they're independently wealthy? I see so many GoFundMe pages fundraising for individuals to get some of these drugs. Could you just speak a little more about that experience and the availability to access them even if drugs do come here?
Erin Little
View Erin Little Profile
Erin Little
2021-06-04 15:42
This is something we always think about as a family. One, we're very fortunate that my husband does have a great benefits package. When Cystadrops came onto the market, the insurance company lay in the weeds to see if the government was going to cover it before the company made the decision. The insurance company just sat and waited, and thankfully, we didn't have to go without the drug in that time period.
In Ontario, though each province as we know is different.... From what I know, every family in Canada has received coverage for cystinosis. We're very lucky. We're an ideal population. There are roughly only 100 of us and not 5,000. It would be a different story, and we'd have a different battle if....
The family I mentioned in my testimony does have Procysbi and the eye drops covered. They have insurance. Their insurance package isn't as nice as our family's. Some of the drugs that treat our children are not covered, because they are supplements, but if they do not get these supplements, they will go into renal failure. One family still pays out $230 a month for these supplements.
The excessively priced drug is one thing. How do I raise my child? Do I have to raise my child for her to take a job in a company, so she can get a good benefits package versus doing something she's passionate about? As Canadians, I don't think we should have to think about that as a family. She should have every equal opportunity and access to treatments. She was born this way. This wasn't lifestyle; this wasn't an accident. This is how she was born.
This is why we need to be concerned. Just because Canada covers these drugs now, doesn't mean it is going to 20, 30 or 40 years from now.
View Jennifer O'Connell Profile
Lib. (ON)
It leads to the fight that even if these drugs get approved.... We look at Trikafta, and CF is a good example. Even when the drugs come through that approval process at Health Canada, the next fight is, are the provinces and territories going to cover them, or is private insurance going to cover the costs?
It just feels that when drugs are approved for use here, the fight begins over who's going to pay for them, because they're so expensive in many cases.
View Don Davies Profile
NDP (BC)
That's the point. It's not just a private commercial transaction. The public grants a patent to private companies, which then have 20 years of protection. Someone has to protect the public interest in this, otherwise a pharmaceutical company could say, “We want a billion dollars a pill, and if you don't pay it, we're just not going to make the drug available.” That clearly can't happen.
I'm going to go to Ms. Little for my last question.
Ms. Little, should we proceed with these PMPRB changes, and what would be the impact on your family and your daughter of those reforms going ahead?
Erin Little
View Erin Little Profile
Erin Little
2021-06-04 16:08
Yes, I do believe we need to move forward. They might not be perfect, but they're progress and that's what we need.
Mr. Davies, I'd like to answer your question, but I just want to say one thing.
Ms. Rempel Garner, I appreciate your calling my testimony today “compelling”. As a patient, I'm not here to be compelling. I, too, run an organization and sometimes I feel that I am dismissed because I tell a story, but I tell the story that everybody at this table serves. We are the customer of this product.
Somebody once said to me that our story is a bit like being suddenly cast adrift in a vast and stormy sea in a lifeboat surrounded by unmarked ships that are being piloted by either the Mexican drug cartels or the Coast Guard, but there is no way of knowing which is which. Sometimes that's how we feel, with government on one side and pharma on the other. Even within the advocacy space, we need to know that we are being supported and that our children and our patients are being protected.
For that reason, I do feel that we need to move forward.
Thank you.
Michelle Porter
View Michelle Porter Profile
Michelle Porter
2021-06-01 15:38
Thank you for the invitation to speak today.
I am the director of the Centre on Aging at the University of Manitoba in Winnipeg. Our centre has existed since 1982 and is the focal point for research and knowledge mobilization on aging in Manitoba.
The first issue I would like to discuss is access to information and services specific to the pandemic. One example here includes the fact that most resources, information and booking systems, etc., have relied on web-based systems. Whether it was finding out about where testing locations were or when to get vaccinated, this information is typically provided as a website. In the short term, we need to ensure that access to information is available through the phone as well. Phone numbers need to be highly publicized, through COVID press conferences, for example. If you don't have access to the Internet, how do you find the phone numbers?
We applaud the federal government for providing funding to add a phone line to the Manitoba 211 services. This is a needed service in the short term.
In the long term, we need to find ways so that everyone has access to the Internet. This requires physical infrastructure. It also requires that everyone can afford the equipment and services, regardless of where they live and what their income is. Access to Internet is critical for long-term care as well. In many homes, Wi-Fi did not exist or was not sufficient, so including this in standards for long-term care would be important. Every resident room and common room in a long-term care home should have good Wi-Fi.
Another access issue that has been quite apparent is transportation. Age-friendly transportation and affordable resources are lacking in many locations, particularly intercommunity transportation. This has affected access to COVID testing and vaccinations. If aging in place is a goal for governments, then we have to ensure that communities are age friendly in terms of transportation.
One tragic story in Winnipeg occurred when a family had to pay for a stretcher service to bring their bed-bound father to a vaccination site. An age-friendly community would find ways to ensure that the environment can enable that person to live in a non-institutional setting and still receive services.
Another long-term care issue is related to quality of life. Clearly, there is not enough recreation staff in long-term care. These workers, primarily women, who are key to residents' quality of life, are often only able to find part-time and low-paid positions. We need to ensure that we think beyond the health care aspects of long-term care and provide much more in terms of social care, because these places are people's homes, not hospitals.
Overall, we need to ensure that all workers in long-term care receive the training they need, as well as the respect that they deserve through proper compensation for their vital roles. As we build back, we need to focus on the care economy and ensure that women from all backgrounds are not left behind.
The final issue I would like to introduce is the consequence of sedentariness during the pandemic. Many older people have moved very little for many months. This has implications for risk of falling, health and physical function. Post pandemic, we will need to ensure that programming and services will be available to respond. For example, we know that an individualized approach is critical for falls prevention. However, in Winnipeg, we have lost universal access to adult outpatient therapies because these services are not part of the Canada Health Act. This means there is reliance on private health insurance or paying out of pocket.
Similarly, access to therapy service is not sufficient within long-term care either and residents have experienced a dramatic reduction in their physical activity. Of course, we cannot forget about all of the individuals who will need to recover from COVID. We need targeted federal funds for appropriate therapies and physical activity programming to allow individuals to recover their physical health.
I would like to end by saying that the Government of Canada endorsed the global strategy and action plan on aging and health of the World Health Organization. The year 2020 saw the official launch of the Decade of Healthy Ageing by the WHO. Canada needs to ensure that, coming out of this pandemic, we are ensuring that older people are able to achieve good health in age-friendly environments that are free from ageism.
Thank you.
View Kate Young Profile
Lib. (ON)
View Kate Young Profile
2021-06-01 15:54
You also, Dr. Porter, mentioned transportation. You said that if aging in place is our goal—and a lot of people now are questioning whether they'd ever want to end up in a long-term care facility—age-friendly communities are important.
What would you think we should do, as a federal government, to further that goal?
Michelle Porter
View Michelle Porter Profile
Michelle Porter
2021-06-01 15:54
Well, the federal government is overseeing the age-friendly communities initiative across the country, although, of course, there's a large provincial jurisdiction over many of the services, which includes transportation. I'm not exactly sure what the role of the federal government is, and this is one of the issues that [Technical difficulty—Editor] involved in transportation, which includes municipalities. Municipalities really need support in providing these services, whether they're rural or urban communities. It is not a great scenario and we see stories in the paper where people are not able to get to vaccination sites, which is the main health care issue right now.
We're doing some projects right now in Manitoba. We did get some funding for them, but it all came about a bit too late. I think in general, within health care, there's a concept that someone will set up the appointments and hope that somehow people will figure out how to get to them. However, we've heard over and over again, when we've done consultations across the province, that transportation is a huge barrier for people when getting services, in particular with health care, and in being able to engage in their communities.
Lise Lapointe
View Lise Lapointe Profile
Lise Lapointe
2021-06-01 17:07
Let me respond and also add to Mr. Lynch's response.
Yes, seniors have a standard of living that normally is not acceptable. Many people have complained about the measure announced by the federal government saying that it is discriminatory. Why shouldn't a person under the age of 75 be entitled to the same amount and a substantial increase in their pension income called the old age pension? We get calls from people who complain and are unhappy with the situation. So that needs to be addressed.
Our seniors don't invest in tax havens, that's for sure. It's also a fact that when they receive additional money, they can afford certain activities that they normally can't afford. This generates economic spinoffs, often at the local level. So you can understand that receiving a little bit more money from the federal government would actually allow them to afford cultural activities, transportation, or a little treat in the week or in the month, something that they normally don't get.
With respect to home care, yes, there is progress to be made. For example, to encourage home care, there could be a grant for the renovation of housing that seniors occupy. Of course, there is a program to help people with disabilities or deteriorating physical health adapt their homes to their situation. However, the forms are so complicated to fill out and the wait is so long that people often have to live two or three years in a house that is not adapted to their needs. So they will choose to go to a private seniors' residence or to a residential and long-term care centre, or CHSLD. So that's another measure that the federal government could improve.
On the other hand, on the municipal side, there should also be agreements so that seniors have access to free transportation. This would make it easier for them to get to doctors' appointments and other appointments without the need for a caregiver or companion.
These are some examples of measures that would not cost astronomical amounts of money, but could make life easier for seniors.
Ellen Blais
View Ellen Blais Profile
Ellen Blais
2021-05-25 11:05
Thank you. Shekoli. Good morning.
I'm speaking to you today from Wasauksing First Nation near Parry Sound.
Thank you, committee members, and thank you, Madam Chair. I am honoured to have the opportunity to have a few minutes to share with you some words about the value of indigenous midwifery to the health and wellness of indigenous communities.
My name is Ellen Blais, and I hold the position of director of indigenous midwifery at the Association of Ontario Midwives. I am a graduate of the midwifery education program at Ryerson University, and I am from the Oneida Nation of the Thames.
I would like to share the name I was given that connects me to my spirit. In the Oneida language my name is Kanika Tsi Tsa, which means Little Flower. I was born through the waters of Many Flowers, who was born through the waters of She Who Carries Flowers, my maternal grandmother. My identity comes from a place of dislocation from the moment I was born, being taken away at birth by child welfare from my culture and my roots. The story of indigenous midwives is inherently related to dislocation as well, up to and including the closure of the Laurentian University midwifery education program.
Sadly, my story is shared by many. Although indigenous people make up about 4%-5% of the population of Canada, in many jurisdictions well above 60% of our population are in the care of the state. Since indigenous midwives are often present at the birth of indigenous babies, they work hard every day to intervene in these destructive practices and are providing excellent clinical care to every indigenous family they are working with. However, there are far too few of us to sustain this kind of work into the future.
I have three recommendations that I will now share, and then provide you with real-life contexts of why these recommendations are relevant.
First, we need a commitment from the federal government to build capacity for indigenous midwifery programs and services by developing a funding strategy to ensure indigenous midwifery is core funded.
Second, we need a commitment from the federal government to provide a mechanism to hire midwives and to provide housing and infrastructure for midwives in first nation and indigenous communities.
Third, we need a commitment from the federal government to provide funding for indigenous midwifery education, so that individual communities can support broader initiatives or create their own midwifery education programs that are relevant to the community, self-governed and community-responsive.
To connect the theme of dislocation, the history speaks for itself. The colonization of indigenous lands and resources also involved the forced removal of our children by the state to be placed in residential schools, now replaced by the current child welfare system. The medicalization of childbirth, along with policies embedded in the Indian Act, pushed indigenous midwives to the side and extinguished their work.
Without these overwhelming forces, midwives would have stood strong to keep birth in our communities. Midwives would have held our babies close and would never have allowed infants and children to be taken out of their mothers' arms. The anti-indigenous racism that is so prevalent in our health systems would not have been allowed to develop exponentially, to the point where indigenous people die from lack of culturally safe care.
In addition, the closure of Laurentian University has left a huge gap in providing midwifery education in the north, and with that, access for midwifery education for indigenous students and the growth of indigenous midwifery in northern communities.
Allow me one moment to ask you a few questions to illustrate my story.
If you have had children, imagine yourself when you were preparing for childbirth, or maybe even preparing for the birth of your grandchild. What were your hopes and dreams for your birth? Where were you going to have your baby? Most likely, you were thinking about your home, your family and your community.
Now replace your thoughts with these. Imagine yourself getting on a plane alone about four weeks before your baby is due. You wave goodbye to your family and hope that they will be okay. You arrive in a small rural or remote community thousands of kilometres away, where you know no one. You live in an unfamiliar place and you wait four lonely weeks until your baby is born. At birth, there is no family, no home and no community. You get back on a plane and you go home all alone with your baby in your arms, with no support.
This is what indigenous people have had to do for generations. It is a harmful and hurtful practice. Where is the sound of the newborn baby's cry? We have only silence. What does that mean for the health and wellness of your community? What has been lost?
In conclusion, access to indigenous midwives is imperative for the health outcomes of indigenous communities. Please consider these recommendations. We are tired of holding this up on our own. We know that to bring back birth is to bring back life. We know how to do this. We are strong, we know what we need, and we are brilliant.
I will conclude with a final ask by sharing a quote from the Women Deliver Indigenous Women's Pre-Conference.
We ask the government of Canada to measure the health and wellness of Indigenous women, girls and gender diverse people as an indicator of the health and wellness of the entire nation.
Thank you. Yaw?’kó
Josyane Giroux
View Josyane Giroux Profile
Josyane Giroux
2021-05-25 12:23
Thank you, Madam Chair.
Good afternoon, everyone.
I thank the committee for having me here today.
I am Josyane Giroux, a midwife and president of the Regroupement les Sages-femmes du Québec, or RSFQ.
The RSFQ is the professional association that represents more than 240 midwives working in the profession throughout the province. It works to develop the profession and its specificity within Quebec's health care system. In collaboration with the authorities and citizen groups, the RSFQ is committed to supporting access to midwifery services that meet the needs of the population.
The RSFQ also defends the free choice birthplace for women or people who give birth, in accordance with the standards of practice of the profession, as well as its philosophy of practice. The RSFQ is recognized by Quebec's department of health and social services as a spokesperson for midwives, and it negotiates their working conditions.
In Quebec, midwifery has been legally recognized since 1999. At the time, there were already six birth centres where 50 midwives worked. In 2008, the Quebec government published its perinatal policy, in which it pledged that, by 2018, midwifery services would be available in all regions of Quebec, that 10% of women and birth attendants could access services and that there would be a total of 20 birthing centres across the province.
According to 2019-20 data, only 4% of maternity follow-ups are carried out by midwives. Many regions still don't have access to services, and all the birthing centres have very long waiting lists, sometimes representing 30% of the number of annual follow-ups that can be offered by the teams.
We think there are three main reasons for this slow-motion development. First, the lack of recognition of the profession in general and its crucial role in reproductive and sexual health is a major issue. The midwifery model of practice, based on relational continuity, confidence in autonomy and respect for the physiological process of pregnancy and childbirth, is not recognized and valued.
In Quebec, the lack of knowledge of the profession heightens tensions and still leads to refusals of collaboration by medical teams. Ultimately, this remains an obstacle in the development of interdisciplinary services or projects that meet the needs of communities. The government has failed in its crucial role of demystifying and valuing the midwifery profession and its importance to the health system. On a day-to-day basis, it is midwives and families who are experiencing this pressure and are still fighting against misperceptions about their practice by clinical teams and the public.
The second major deficiency is the lack of workforce planning and workforce monitoring consistent with the objectives presented. Despite numerous representations in this regard by the RSFQ and other organizations, the warnings were not heard by the Quebec department of health social services. Midwives and families are the main victims of this lack of political leadership, as labour shortages are now affecting all midwives and forcing them to reduce services to the population. At this very moment, more than 20 contracts are unfilled in the province, and the opening of at least two birthing homes has been delayed.
In Quebec, the Université du Québec à Trois-Rivières is the only educational institution for the midwifery profession. It has a capacity of 24 students per year since the program opened in 1999, but is struggling to fill these places due to the lack of midwives to accompany trainees. It is essential that national consultation work involving the groups and community-based organizations directly involved, including citizen groups, be undertaken in order to find solutions and establish a clear plan.
The third very important element to consider in the analysis of the development of midwifery services and its slowness is the gender discrimination that midwives experience. The midwifery model, developed to meet the needs of women and pregnant persons and whose services are mainly aimed at women, is the source of indecent working conditions. Quebec midwives, at the end of their careers, earn 20% less than their comparable pay equity jobs. In Quebec, in 2019-20, the government paid only a total of $23,561,343 for midwifery services, including all operating costs. These working conditions, in addition to the context described above, lead to many early departures from the profession, exacerbating the shortage of human resources.
At the same time, the RSFQ operates solely based on membership dues, as the government does not recognize the importance of a strong professional association for supporting the development of the profession. Our association therefore struggles to meet all the needs, both those of its members in a global way and the support in the strategic work more than necessary.
Finally, it is with humility that I would like to add that the elements I've described are an exacerbated reality for women, pregnant people, and midwives from indigenous communities.
To date, there is no clear plan to provide families in these communities with access to midwifery services. Collaboration is at its starting point between governmental and legal organizations, communities, universities, and associations.
Our NACM colleagues and indigenous midwives will certainly be able to explain the issues in detail, but we believe it is crucial that the committee look at these matters.
In short, the RSFQ asks the provincial, territorial and federal governments to set up a campaign to demystify, promote and recognize the midwifery profession; invest in the establishment of a working committee for workforce and development planning in line with community needs; provide funding to professional midwifery associations, essential in supporting practice at all levels; recognize gender discrimination faced by midwives and adjust working conditions to end it; and prioritize work for the training, accessibility and development of midwifery services in indigenous communities.
Thank you, committee members, for your attention.
I will be happy to answer any questions you may have.
Ann Collins
View Ann Collins Profile
Ann Collins
2021-05-20 14:38
Thank you, Mr. Chair.
I am Dr. Ann Collins. Over the past three decades, I have taught family medicine, run a full-time family practice, served with the Canadian Armed Forces and worked for 20 years in nursing home care. Today it is my privilege to speak to you as president of the Canadian Medical Association, representing the sentiments and convictions of our 80,000 members.
Since inception in 1867, the Canadian Medical Association has advocated on matters of national health. The pandemic has showcased the enormous strengths and tenacity of the professionals who are at work delivering the nation's health care. It has also shown us how quickly our resources can be overwhelmed. Our country's recovery hinges on the recuperation of our health networks, because economic security cannot exist without health security.
Of the significant investments announced in budget 2021, we are pleased to see the attention paid to better care for our older adults and the communities most impacted by structural inequities. We can create a more dignified provision of care in long-term care facilities and support age-in-place strategies. We can address social determinants of health and invest in the battle against climate change. These commitments will fortify the equitable health security of Canadians.
The CMA especially welcomes the federal government's commitment to provide the provinces and territories with $4 billion through a one-time top-up to the Canada health transfer. This will support health systems with the capacity to clear the backlog of delayed procedures from the first and second waves. Bill C-25 is the lifeline to Canadians' immediate health needs. It must pass without delay.
Canada's job now is to address equitable access to primary care teams. Thirteen per cent of Canadians lack access to a family doctor or a family care team. That's an astonishing five million Canadians.
Primary care is the front door of health care. It is affordable, it fosters equity, and it will be essential in supporting Canada through and out of the pandemic, but the door is broken and off its hinges. It's struggling to remain upright.
The federal government has long expressed commitments to invest in the expansion of primary care, with good reason. Expanding primary care will help ensure that every Canadian has access to a family doctor or primary care provider. Every person in Canada, especially those most impacted by structural inequities, deserves the attention of a primary care team.
At present, much of our care exists in a vacuum. One discipline is completely severed from another. We don't accept divisiveness in any other aspect of life. How can we accept it in our health care system?
Primary care is a team-based model that is rooted in the networking of health professionals. They work in concert, just as a healthy body does. Primary care is the infrastructure with which to deliver mental health services and make virtual and remote care a reality. I think we can all agree that making a distinction between physical health and mental health is antiquated. The time has come to work towards parity in the resources needed to treat Canadians, regardless of their illness.
The future of sustainable health care is housed in the success of primary care. Our younger physicians and physicians in training seek to practise under this model. It is the means that will prevent greater illness and further strain on our health care systems. This is the time to support the future of medicine, the future of care, the future of Canadians' health.
The CMA appeals to parliamentarians to deliver this critical health care resource in budget 2021. There's still time. An infusion of federal funds in the amount of $1.2 billion over four years would expand the establishment of primary care teams in each province and territory.
We are equally intent on seeing an increase in federal funding for health care to the provinces and territories in the long term. It is the truest signal of collaboration.
Mr. Chair, let me thank the committee for the invitation. The CMA is grateful for the opportunity.
View Lindsay Mathyssen Profile
NDP (ON)
Thank you.
One of the things the Canadian government has a responsibility for doing is to enforce the Canada Health Act. Within that, of course, is reproductive services being available to women across Canada equally and fairly. Certainly the role of midwives has the ability to expand. For example, in Hamilton, Ontario, they are working with other doctors, ensuring that they have medications available so that women who need access to reproductive services can get them.
Can one of you, or all of you, quickly talk about expanding that role of midwives to ensure that women have that equal access under the Canada Health Act to reproductive services and health services?
Kirsty Bourret
View Kirsty Bourret Profile
Kirsty Bourret
2021-05-10 19:27
I have to jump in and speak here, because this is an area of interest of mine.
It's important to point out that it actually isn't an expansion of our role. In Ontario it is, but when you look at our global definition of midwifery, we have it within our scope to provide all sexual and reproductive health care, which includes contraception, which includes access to abortion. This is something that's well known and that we are trained to do.
Again, around the world, I am working with Global Affairs Canada to ensure that midwives have the capacity to do this within their scope, which means increasing access to sexual and reproductive health care, especially in very, very remote and rural areas. We've been arguing for that for a really long time. While in Ontario it might look like an expanded scope, really the vision of midwifery at the national level is to be able to provide these services across Canada.
You know, this will have a huge impact on our ability to impact this issue around our overall lack of access to contraceptive and reproductive health care, especially with indigenous and other populations that are at a disadvantage. I think there is an opportunity here to have this discussion and to raise awareness of midwives' capacity to function in that way.
View Anju Dhillon Profile
Lib. (QC)
My God.
Ms. Bacon, I have a question for you.
You've done considerable work in sexual health education. Can you share with us how midwifery services support the provision of sexual and reproductive health care in Canada?
Alixandra Bacon
View Alixandra Bacon Profile
Alixandra Bacon
2021-05-10 19:55
Thank you so much.
This is an area where midwifery is greatly underutilized, as Dr. Bourret alluded to earlier.
It is within the scope of a midwife to provide cervical cancer screening, to be providing contraception, including the placement of intrauterine devices and the new Implanon contraceptive insert. It's in our scope of practice to be testing and treating for sexually transmitted and blood-borne infections.
However, in some jurisdictions, this is with an advanced scope of training. It is not accepted in all jurisdictions. There are also constraints, in that we are limited to providing this care, in most cases, though not all, to people who are pregnant or in the first three months postpartum.
This is an area where midwives could be providing a much larger role and having a bigger impact in helping to meet that unmet need for contraception in Canada, for long-acting, reversible contraception in particular, and that culturally safe component of care.
There are pilot projects, in Ontario in particular, such as the MATCH program, where midwives are working with delegation of function to be able to provide these services to people outside of that child-bearing year, as well as to provide abortion services. These are areas where we can expand.
View Jag Sahota Profile
CPC (AB)
You both spoke about this, but I think it was more Ms. Bacon who spoke about the C-sections and hospitalization admissions being low when there are midwives involved. What are some of the contributing factors for that ? That's actually quite interesting.
Kim Campbell
View Kim Campbell Profile
Kim Campbell
2021-05-10 20:12
You bet. It is my wheelhouse. That's the evidence-informed practice for midwifery care.
We have evidence that supports the fact that the role of the midwife contributes to several decreases in interventions, caesarean sections being one of them. We think it's the continuity of care. We think it's the relationships we build and the trust and the comfort that people have when they're with someone they know. It's quite simple: It lets their body do the work. Anxiety stops that, so when you create a soft landing spot and a safe place for people, the body does what it needs to do. It's very simple. That's it.
Alixandra Bacon
View Alixandra Bacon Profile
Alixandra Bacon
2021-05-10 20:12
I would add that midwives picture birth as a normal life event. We do not pathologize birth. Also, we've learned the art of watchful waiting.
There's the cliché of midwives knitting in the corner, but it's for a very good reason. If we're knitting, we're not intervening needlessly. I think that's a real unique midwifery skill set that contributes to the decreased caesarean rates, as well as the time with our clients to make sure they're really well informed and prepared for what to expect in a birthing process.
Also, they have that continuous support in labour. We don't just sweep in at the end and catch a baby. We are with them from the onset of active labour until an hour or two after they birth, and that means that sometimes I might spend 14 hours straight with someone in supporting them. I believe it's that quality time that we spend one-on-one that makes the difference.
View Jag Sahota Profile
CPC (AB)
You've just said that you can spend up to 14 hours with someone. Do you come up with specific solutions for the clients depending on their needs and accommodate them? Let's say they're a high-risk client. Does the care start earlier than it does for others and end later as well? How is that managed?
Kim Campbell
View Kim Campbell Profile
Kim Campbell
2021-05-10 20:14
I can jump in a bit here.
We have a system of risk assessment and we make sure that we individualize the care to meet the risk and the needs of the person. We always have our antennae up. We're always checking the environment. We're always situationally aware, and we pivot constantly.
View Lindsay Mathyssen Profile
NDP (ON)
Thank you.
I just wanted to use my final time on postpartum care. You've touched on it a bit but we haven't heard a significant amount about your postpartum care and what that means to women and the services that are provided—the difference in care that it provides.
Alixandra Bacon
View Alixandra Bacon Profile
Alixandra Bacon
2021-05-10 20:22
I think you see Kim and me smiling because you have touched on what is perhaps the biggest selling feature of midwifery care. We look after birthers and their babies until approximately six weeks postpartum—or at least we're compensated in my jurisdiction to six weeks, and care for them of up to 12 weeks, so there is that continuity of care. In the first week postpartum, those visits happen in the house. We do not expect you to pack yourself and your new baby into the car and drive to our office at five days postpartum, and we're coming the very next day. We will see you each day that you're in hospital, if you are in hospital, until you are discharged, and your very first day after discharge we're coming to you at home.
I can tell you both as a midwife and as a mother that if you are hoping to breastfeed, it is not as easy as it looks. It is extremely difficult, and your success is dependent upon receiving care early on. If I had had to wait until day five postpartum, my son would not have been fully breastfed or perhaps been a child who was not breastfed at all.
That is a place where our care really shines. It's also where we really have an opportunity to impact families as a whole in recognizing and responding, for example, to family-based violence or child neglect. We are very privileged to be able to enter people's homes and it really deepens the trusting relationship and is one of the most beautiful and heartfelt parts of our work.
View Lindsay Mathyssen Profile
NDP (ON)
Thank you, Madam Chair.
We heard in this panel and the last, as well, about the importance of the relationship that women have with their midwives, and that is a special relationship because it is fully about trust. Delivering in the best of situations is very stressful—not that I've done this yet but so I've been told by many friends.
To have services in your own language, to be able to be serviced in ways that are culturally appropriate and culturally sensitive.... Could the witnesses talk about the importance of that, in addition to—and I know that Ms. Recollet and Ms. Wolfe are in more of an urban centre—the special needs for northern remote, as you also mentioned before, communities and women having access to those culturally sensitive, traditional knowledge-based practices with indigenous or aboriginal midwives?
Angela Recollet
View Angela Recollet Profile
Angela Recollet
2021-05-06 12:42
We're not just going to talk about Ontario and Quebec. We need to talk about what you now call Canada as a whole.
I'll give you an example. With the Inuit nation, those mothers, those expectant mothers, have to be displaced from their communities and their families, with only one individual to accompany them as a support system, and have to travel hours and hours, sometimes 40 hours, in order to get to a nursing station to have a non-Inuit or non-native practitioner provide care that is unsafe, lacking cultural bias to their birthing right. That in itself has to be recognized. A solution-based policy would be to provide access in our traditional territories. We do not want to be displaced anymore, and that goes from coast to coast to coast when it comes to our circle of life.
Even here in an urban setting, as you're asking, it wasn't by choice that we were located to urban settings, but I can say that 80% of the indigenous population in what we now call Canada has been displaced to urban settings so that they can have the same access to care that all of you on this call have.
We continue to have to fight for this, to reclaim who we are as indigenous people in these first territories with limited access to resources and constantly needing to justify why we require it. Right from birth to death, this is our ongoing struggle and our ongoing education that we need to provide to newcomers, to government officials, to everyday people walking down the street, to break down what you've learned and provide you with a different education so you know the true history in Canada.
View Salma Zahid Profile
Lib. (ON)
Thank you, Ms. Hart.
I have one more question.
Are there any gaps between the support services which are offered in the rural areas and the urban areas? Also, could you throw some light on how health care services for women living in rural areas could be improved, because that's also one of the very big issues.
Maybe Ms. Anderson wants to talk, or—
Traci Anderson
View Traci Anderson Profile
Traci Anderson
2021-04-27 11:58
Thank you for the question, Madam Chair.
We are seeing a big increase in some mental health challenges. There are definitely gaps in rural communities around women accessing...and primary health as well.
My community is 100,000 and people are on wait-lists for doctors, so I can only imagine it in smaller communities. Some of them are travelling four or five hours to get access just to primary care.
We definitely are seeing a huge increase, especially in young women, around mental health concerns. That's also due to the pandemic. We are seeing some youth who are really losing hope around their future. That's very challenging and disheartening to see happening. There are not a lot of resources and access to supports in rural communities, mental-health wise and primary care.
View Sonia Sidhu Profile
Lib. (ON)
Thank you, Madam Chair.
Thank you to all the witnesses for being here.
I know that Punjabi Community Health Services is providing important services to Bramptonians. Thank you for that.
I would like to direct my question to Ms. Dhillon.
Ms. Dhillon, we live in the same community. We see the impact of the pandemic every day in Brampton. We have heard in this committee how racialized communities have been disproportionately impacted by the pandemic. How can we ensure that they have access to health services and are supported as we recover economically?
Puneet Dhillon
View Puneet Dhillon Profile
Puneet Dhillon
2021-04-27 12:46
Thank you, Ms. Sidhu. This is a very important and much-needed question at this time. I'll try to answer it to the best of my capacities.
First, what I see as the solution to the problem that we Torontonians are all facing is that one barrier to accessing the services could be a lack of awareness about the resources that are present.
Another important barrier is lack of knowledge of the language, because most South Asian women who are homebound and are working at home and do not have access to any of those language instruction classes have very big barriers. Being a South Asian woman myself, I have also met many others who do not even know how to navigate with a GPS, how to connect to these resources, or even how to make a phone call, so language has become a huge barrier.
A third barrier, which has come since COVID-19, is mobility, because when we come here as immigrants, the major problem is that there is always a barrier to mobility, both from a financial point of view and physically. Sometimes South Asian women, especially Punjabi women, who want to go from here to there have to depend on their male counterparts in the family. They have to wait for them to come home from work and then for them to take them somewhere. This is one of the problems. I think awareness and education about all the resources available are the key. More connection between the community service organizations and the communities and a more diverse touch to these types of services will help us remove at least some of these barriers. This is my belief.
View Sonia Sidhu Profile
Lib. (ON)
You know quite well that many seniors in the South Asian communities have real language barriers. Do you believe they are at a disadvantage when it comes to accessing any services, such as health care services or vaccination services? What is your advice on that? How can all levels of government bridge the barrier?
Puneet Dhillon
View Puneet Dhillon Profile
Puneet Dhillon
2021-04-27 12:50
Thank you, Ms. Sidhu, for giving me an opportunity to answer this question, because seniors definitely feel kind of abandoned or alienated in a society where the language is a big barrier. We often come across senior clients who drop in or who call in because they do not understand. Sometimes, it's even worse. They do not want to pick up the phone to call. They do not know what language the phone operator on the other end will use. I think more culturally competent services and more linguistically appropriate services are required for seniors. There has definitely been a huge barrier, and in fact, there have been many cultural taboos around vaccine. There have been many myths. We try our best in our languages to get those myths resolved and to give proper answers about those myths, but still they do not reach those targeted areas in a targeted language. We need a more culturally and linguistically sensitive approach to reach out to our seniors.
Ann Collins
View Ann Collins Profile
Ann Collins
2021-04-23 14:10
Thank you, Mr. Chair.
It's my honour to appear before you today. My name is Dr. Ann Collins. I am a retired family physician. I taught family medicine. I ran a full-time practice. I've served with the Canadian Armed Forces, and I've worked in nursing home care. Just yesterday, I was called back into service to administer much needed vaccines to people in my rural home community.
Mr. Chair, I am honoured to appear before you at this time in the pandemic representing the physicians of Canada and the people they care for. I am joined today by my colleague, Dr. Abdo Shabah, CMA board member and emergency physician serving on the front line during the pandemic in Quebec.
As president of the Canadian Medical Association, I am gravely concerned about the state of the pandemic in Canada today. In particular, in hotspot regions where we are facing extreme circumstances, I applaud the federal government for its unrelenting leadership and unprecedented action in leading our national response.
The pandemic has been unrelenting in challenging the physicians and health providers on the front lines, and the third wave is hitting hard. The CMA is deeply concerned about the toll COVID-19 has taken on the people who will steer us out of this health crisis. Emergency doctors are working 12-hour shifts and then being required to work another four hours, day after day. Fatigue and anxiety are high, threatening burnout, yet there is no relief in sight.
Medical professionals are being trained on critical care triage protocols, which may be enacted to respond to the lack of resources. If enacted, physicians will be in the untenable position of making the difficult life-and-death decisions about who gets care and when. The moment we have dreaded and feared, when the pandemic's grip is surpassing resource capacities in some regions, is here.
The CMA implores provinces and territories to continue to act in the spirit of collaboration to ensure that our resources are deployed where they are needed. We must work together for the common good to prevent loss of life wherever possible. Some areas of risk have already benefited from the aid of resources shared by the premiers—most important today is critical care staff. To call these actions laudable is an understatement. The CMA commends the federal government for its leadership in encouraging and facilitating this deployment of national resources.
Canada's recovery is contingent on the recovery of our health system. We vigorously applaud the recent commitment of $4 billion to resolve the backlogs of the first and second waves. I cannot stress too profoundly the incredible urgency for Parliament to pass Bill C-25 without delay.
Still, more is needed. Today, five million Canadians do not have access to a family doctor or a family care team. That's 13% of the country. If our health care systems are a house, primary care is the front door. The drafts are increasing. There's no security when the front door is off its hinges.
Primary care is affordable, it fosters equity and it will be the cornerstone of health care supporting the people of Canada through and out of the pandemic. Expanding primary care will help ensure every single Canadian has access to a family doctor. The right to access health care must not be subject to our status or postal code. Every marginalized and susceptible person in Canada deserves the attention of a primary care team.
Our nation has never been in more dire need of health security. The CMA appeals to Parliament to deliver this critical health care resource. There's still time. The pandemic has exposed the weaknesses, the shortages and the lack of capacity of Canada's public health care systems. We must begin to chart the course in reimagining public health and health care. The long-term mental health impact of COVID-19 on frontline health care workers is coming. We must prepare for it.
All of this will require a commitment to increased and sustained funding from the federal government. The CMA welcomes the Prime Minister's pledge to engage the provinces and territories in a continued and collaborative plan to address the future of our health systems.
The financial commitments the federal government has made to support Canada's pandemic response are exemplary. Investments to date will improve lives. They will save lives. But there are still some missing steps that lie before us. Completing them will allow all Canadians an equitable opportunity at health security. Completing them will sustain our frontline health care workers in the fight they face today and in the care they must provide in the future.
In conclusion, Mr. Chair, let me thank the committee for the invitation to share the convictions of Canada's physicians. The CMA and its 80,000 members will be there to fully support the government in addressing the stability of Canada's health systems.
Thank you.
View Sonia Sidhu Profile
Lib. (ON)
Thank you, Mr. Chair.
We know that our communities and our medical professionals are under increased stress in the third wave. My community is a hot spot of COVID-19. I want to thank all frontline medical workers, nurses and doctors who are saving Canadians every day.
My question is for Dr. Collins. We know that our government announced new supports for Ontario, including sending federal health care staff and equipment to the front lines and more. In your testimony, you referred to an additional $4 billion from the federal government going towards the Canada health transfer to help provinces get through this pandemic. What are some immediate needs that you think the provinces should be targeting?
Ann Collins
View Ann Collins Profile
Ann Collins
2021-04-23 14:36
Through you, Mr. Chair, we commend the government for the added $4 billion directed to address the backlog and the million dollars for vaccine delivery. We are not yet fully aware of what the impact of this pandemic will be on backlogs. We know that there have been incredible increases in wait times. We know that people have delayed seeking medical attention. What that will lead to when they arrive, of course, is diagnoses that are much more complex, and the need for diagnostic and treatment services will be that much more complex as well.
We also feel that it's imperative that there be a commitment to a previous promise that every Canadian should and can have a family doctor. We know that primary care is critical in how we deliver care to Canadians, including what is going to be needed post pandemic, and there is also the incredible requirement for what we anticipate is going to be needed to provide mental health care not only to health care providers, but to their patients as well, as we come out of this pandemic.
View Luc Thériault Profile
BQ (QC)
View Luc Thériault Profile
2021-04-23 14:42
Thank you very much, Mr. Chair.
I'd like to thank all the witnesses for their contributions, which help us understand the collateral damage caused by this pandemic. One of our concerns is patients who haven't had COVID-19. Physicians from the Canadian Medical Association have provided an overview that talks a lot about the management of the pandemic. We've heard very little about the collateral damage to patients who haven't had COVID-19.
Dr. Bélanger, from the Association des gastro-entérologues du Québec, recently told us that urgent matters should not cause us to lose sight of what's important. When we talk about the fight against cancer, we agree that this disease doesn't wait for pandemics or their resolution to spread.
Dr. Collins, I get the impression that you have a very clear idea of what the post-pandemic will be like. When will it take place? You said earlier that something had to be done during the pandemic, that you were pleased with the funding to deal with what happens during that time and that we would have to see afterwards, but what do you mean by “after”? When will this happen?
Abdo Shabah
View Abdo Shabah Profile
Abdo Shabah
2021-04-23 14:43
Thank you, Dr. Collins.
Thank you for your question, Mr. Thériault. It's quite relevant.
It's undeniable that the tragedy of the pandemic today is compounded by collateral effects caused by delays in medical procedures. CMA investigated this issue in October of last year and recently released a report on reducing delays.
I'll mention some of the findings of the report. As COVID-19 cases began to increase in Canada, it became clear that there was additional pressure on the health care system. This is what we're experiencing today, on a daily basis.
You talked about what is urgent and what is important. We're dealing today with what's urgent, but the report also talks about what's important. This includes procedures such as joint replacement, which affects quality of life, cataract surgery, or diagnostic imaging, which has a major impact not only on quality of life but also on survival. When we're trying to diagnose cancers, for example, we're facing significant delays that result in a significant backlog of procedures and a significant increase in wait times. The situation surrounding these interventions, which are essential to survival and have a significant impact on [Technical difficulties—Editor], allows us to take a look at the precarious nature of our health care system.
Therefore, we're calling on all levels of government to expand primary health care services and increase support for health care so we can deal with those backlogs that were already starting to build up by the time we realized the situation, during the first wave of the pandemic. There was a second wave and now there is a third wave. It's clear that Canadians will suffer the consequences of that.
View Don Davies Profile
NDP (BC)
Thanks, Dr. Collins.
On April 20, you released a statement in response to budget 2021 that said the following:
We are...disappointed that this budget did nothing to address the problems faced by the nearly five million Canadians who must navigate medical issues without consistent access to a family doctor or a primary care provider. The federal government has committed on numerous occasions to ensuring each Canadian has access to a primary care professional, but we have yet to see any real commitment to this ongoing issue.
What will be the impact of this lack of action?
Ann Collins
View Ann Collins Profile
Ann Collins
2021-04-23 14:51
Primary care is clearly the front door to the health care system, and as I've stated earlier, we don't know the full impact the pandemic has had with respect to wait times, and so on, but we know that those Canadians who do not have a family doctor are going to have a much harder time navigating the system to deal with issues such as their mental health care. We know that seniors need strong access to primary care.
We've not mentioned it today, but patients with long COVID are going to need primary care. Thus, we need to see a commitment to delivering on that, to expanding the role of primary care teams. Also, we need to start being more innovative and look at how we deliver health care with respect to the social determinants of health and taking in the many issues beautifully outlined by Dr. Bloch around equity in health care.
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