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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?
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