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Results: 1 - 15 of 134
View Tom Kmiec Profile
CPC (AB)
Thank you, and if you have any information about the economics that go into it, that would be great too.
Mr. Brudno, you're the one who mentioned sticker shock. Drug access is the big portion of it. It's really led by a lot of patient groups. When my kids were diagnosed with Alport syndrome, it was after a lot of misdiagnoses. When you talk about early diagnostics, I totally understand.
I met my physician by accident at a patient medical conference in Minneapolis. He was standing right behind me when I asked if there was a Canadian there. He happened to be the head of pediatric nephrology at the Alberta Children's Hospital. I think he was one of the gentlemen who presented at the committee. I met him wholly by accident. Had I not done that, I would have gone through a lot of misdiagnoses.
I'm sure, Mr. Stedman, you went through the exact same thing I did.
We got to the point where the federal government had actually created a rare disease framework to make it easier to provide a pathway for rare disease drugs. That was killed off. The court called it the kiss of death and they got rid of it. The federal government didn't continue with it after 2015. It kind of laboured, and it's gone now.
What would a rare disease framework look like to you specifically in the government? The FDA has kind of a fast-track process for the approval of drugs, but there's approval of drugs, there's drug access and then there's reimbursement as well. I have met a lot people in my riding who have rare diseases I have never heard of. Their drug is approved in Canada but not for reimbursement. They face huge out-of-pocket costs because their public insurer refuses to cover the drug.
Can I hear from you on that?
Michael Brudno
View Michael Brudno Profile
Michael Brudno
2018-10-25 9:07
In general, I think it's important when we look at.... All of these are important components: having the access, having the drug approved in Canada through the efforts of pharmaceutical companies doing clinical trials. Then making it available means making it reimbursable to the extent possible within the public health care system.
Out-of-pocket costs for these drugs can be huge and they are not bearable by individuals, but they can be borne by a society that averages those costs across lots of other individuals and also a society where we identify as many patients as possible who are eligible for a specific drug, which will cause the prices of those drugs to go down.
I don't think I can give you a specific sort of recipe—this is what you do here, this is what you do there. Obviously everything in the health economics space is a question of balance. You're balancing the costs to the health care system versus the benefits that this brings to all of the individuals who are affected and to the society at large.
Kevin Rebeck
View Kevin Rebeck Profile
Kevin Rebeck
2018-10-18 9:25
Thank you for the opportunity to present.
The Manitoba Federation of Labour, or MFL, is Manitoba's central labour body, chartered by the Canadian Labour Congress. It represents the interests of more than 100,000 unionized working people from every sector and every region of the province.
The MFL works to promote good jobs, fairness, and social and economic justice for all. The priorities outlined in the submission are informed by long-standing MFL policies, convention resolutions and emerging needs identified by our members.
As part of budget 2019, we recommend that the federal government prioritize health care services that families depend on, as well as look for opportunities for improvement as follows.
One, begin budgetary planning to implement a national, universal, single-payer pharmacare program in order to ensure universal access to prescription drugs, save Canadians money and improve health outcomes.
Two, commit to a long-term national health care funding arrangement with provinces and territories to reverse the cuts implemented by the Harper government and continued under this government.
Three, increase the federal government's share of health care spending while enforcing the principles of the Canada Health Act.
Four, work with provinces and territories on a national strategy for seniors care, including investments in public home care and community support services.
In order to address Canada's long and poor record of productivity growth, the federal government must put quality jobs at the heart of its agenda. Labour market and social policy should systemically restrict precarious work and the exploitation of vulnerable workers. We urge the federal government to take immediate action on pay equity to ensure that women are paid the same as men for the same work. Don't delay this until after the next election; women have already waited far too long for this fairness.
We'd like the government to prepare workers to adapt to technological change and emerging skills needs to ensure workers are able to meet the job requirements now and in the future, including making sure that Canada is the leader on implementing a right to continuous workplace training and lifelong learning.
We'd like the government to prioritize access to training opportunities for groups with fewer opportunities, including youth, low-skilled workers, workers with disabilities, newcomers to Canada and workers of colour. It should also expand vocational opportunities through apprenticeship and on-the-job experience, while recognizing the vital role of labour, employers and post-secondary educational institutions in partnering to deliver those opportunities.
Finally, it should mandate that employers hire and train apprentices on federally funded infrastructure projects, including utilizing community benefit agreements and project labour agreements to maximize local job and training opportunities.
To support working families, the federal government needs to invest in more supports for working families to ensure that life is affordable and that parents, especially women, have greater opportunities to get good jobs and contribute to our economy. We call on the federal government to transfer $1 billion in 2019-20 to provinces, territories and indigenous communities in order to establish universal, accessible, affordable, high-quality and fully-inclusive early learning and child care in Canada. Delivered by public or not-for-profit providers, this funding must come with a strings-attached approach to ensure universality and affordability.
We'd like to see reform to the EI system to better reflect the realities of working people, especially women, including reducing the number of qualifying hours to 360, measuring a week as 30 hours instead of 35 to reflect the average Canadian workweek, and reforming the EI sickness benefit to permit working while on claim, while expanding the number of weeks for sickness benefits to deal with episodic or long-term illness.
We'd like to see restoration of the more than $58 billion that's been withdrawn by government from the EI fund, and we'd like the government to end the use of EI funds for non-EI purposes. We'd like to see increased training supports for EI recipients, including targeted programs to help workers from equity-seeking groups to overcome barriers to employment, gain valuable, on-the-job experience and acquire training in high-demand occupations. We'd like to bring back the ability for workers to drop periods of low and zero earnings from the calculation of their CPP benefit and increase the CPP income replacement rate further, raise the ceiling on pensionable earnings, and further enhance the portion of employee contributions that are tax-deductible. These continued inequalities primarily impact women and the disabled.
Finally, on poverty reduction, too many Canadians live in poverty, especially women, indigenous people and children. The federal government's strategy to reduce poverty must include a comprehensive plan to eliminate poverty in Canada by raising the federal minimum wage to a living wage of $15 an hour, which sets the standard for provinces to follow; increasing the Canada social transfer to fund social assistance and support for people with disabilities; increasing the flat rate old age security benefit and indexing it to average wage growth; and reforming the federal insolvency regime in order to better protect workers' pensions and benefits in creditor protection and bankruptcy.
Thank you.
Doug Coyle
View Doug Coyle Profile
Doug Coyle
2018-10-04 8:55
Thank you. Thanks to all my fellow speakers who have come today.
My name is Doug Coyle. I'm a professor at the school of epidemiology and public health at the University of Ottawa. I'm a health economist and have worked in this research area for the past 28 years. I have no conflicts of interest to report regarding this matter.
Previously, I've been a member of the Ontario Ministry of Health and Long-Term Care's committee to evaluate drugs and the drugs for rare diseases working group, as well as the Canadian expert drug advisory committee of the Canadian Agency for Drugs and Technology in Health, or CADTH. In all of these committees, I've helped make recommendations on the funding of new pharmaceuticals.
Thank you for giving me the opportunity to present my views today. My research and my teaching is driven by my passionate belief in the necessity of a publicly funded health care system. This is based on both the fundamental belief that equality in access to health care should be a right, and that the nature of health care as a commodity is such that provision through a market-based system is inefficient. The latter should really never be underestimated.
Despite my strong beliefs in the need for a publicly funded health care system, I feel my presentation today may be contrary to other speakers.
I've been asked today to present my views regarding barriers to access to treatment and drugs for Canadians affected by rare diseases and disorders.
Our health care system is under increasing pressures. New, more costly interventions have become available, and the clamour for their adoption is great. It is important that we have a process to assist decisions related to which technology should be funded, based on the values and wishes of Canadians. Given this, I believe that fair, equitable and transparent processes for making the complex and difficult decisions with respect to reimbursement for health care interventions are a necessity to ensure the sustainability of our health care system.
Although the processes currently in place are a start, they do not sufficiently address the challenges facing our health care system today. I suggest the fundamental principle by which we need to develop such processes is a need for fairness, as difficult decisions on what should and should not be covered need to be made through a process that recognizes the need to treat people equally—that is, a health benefit gain for any Canadian should be considered of equal value. Thus, the aim of our health care system would be to increase the overall health of the Canadian population.
However, given our limited budget for health care, not all new technologies will increase the overall health of the population. Despite claims, most if not all new technologies do not save money in the long term. Thus, we need to assess whether prices given for new technologies are justified, given their potential benefits.
We can assess how efficient the Canadian system currently is at producing improvements in population health. Current estimates suggest that we spend about $30,000 to $50,000 for every additional year of healthy life gained. That could be the benchmark to assess whether a new technology is worthwhile. Given our constrained budget for health, in deciding to fund technologies that cannot produce benefits at that price, the necessity is that we are therefore reducing the potential health of the Canadian population. By this, we are implicitly deciding that the health benefits to one group of Canadians are of greater value than similar benefits accrued by others.
Numerous surveys have been conducted both in Canada and worldwide that have explored whether the general public is willing to accept reduced levels of health across the whole population for improvements for specific populations—that is, are these populations for which they believe the health benefits are gained of greater value than other populations? The results of the surveys have repeatedly shown that the public does not value rarity as a sufficient reason to give greater weight to the health benefits accrued. Thus, to reflect societal values, technologies relating to rare diseases should be evaluated using the same criteria as technologies affecting more common conditions.
I'd like to present again the case of Soliris to this committee. Soliris is a drug for the treatment of a rare disease called paroxysmal nocturnal hemoglobinuria, or thankfully, PNH. It is a rare blood disorder. Soliris is effective. It reduces the instance of thromboembolism, the main cause of mortality in this disease, and it reduces the need for blood transfusions, a major management cost of the disease.
However, Soliris literally costs $500,000 per patient per year. An independent analysis is that funding Soliris could only increase the overall health of the Canadian population if a price reduction of 98.5% were achieved. Although Alexion pharmaceuticals has been required to reduce the price of Soliris, it is unlikely to have been to this extent.
We are often told that funding for rare disease will have little impact on health care budgets and there is a reason for being more lax in funding decisions. However, the funding of Soliris at the original listed price would cost more than $100 million per year if all those eligible received treatment. These resources could provide many other health care services to Canadians that would produce much greater health benefits.
Thus the decision to fund Soliris in certain provinces, even with the reduced price, should not be viewed as fair. Given the constrained resources facing our health care system, funding Soliris has led to many thousands of Canadians not receiving the health care that would have given them benefit. The overall health of the Canadian population has therefore declined as a result of such funding decisions.
There are many other examples of drugs for rare disease that are funded and for which the decision to fund will have resulted in a reduction in population health. More recently you may have heard of the coverage of the issues relating to the funding of the drugs Orkambi and Kalydeco for cystic fibrosis. There has been much media coverage relating to the inconsistency of coverage of these products across Canada. Analysis of the long-term benefits of these products by CADTH suggests that for their funding to result in an increase in the health of the Canadian population, the price of the product would have to be reduced by at least 90%. Not funding Kalydeco or Orkambi has been a responsible decision by the provincial ministries, in that funding these products would deny other Canadians the health care they require and that health care would provide greater benefits to the Canadian population as a whole.
An argument we typically hear is that Canada should be rewarding manufacturers of innovative medications. We should, however, support innovation by ensuring that funding is given to those technologies that represent value for money—that is, that they provide greater increases in the health of the Canadian population. It is hard to argue that a product that if funded will lead to reductions in the overall health of the Canadian population is truly innovating.
With the discussions in Canadian media coverage of issues regarding funding of drugs for rare disease, little focus is placed on the exceptionally high acquisition cost of these drugs and the role of manufacturers in creating these difficult situations, as evidenced by Dr. Midgley. Treatment with Orkambi costs $300,000 per patient per year. An interesting article recently explored the difference in the media coverage within the U.S. and Canada with respect to Orkambi. In Canada, the focus is typically on individual patients' fights for coverage, while in the U.S., the focus is on financial aspects relating to the product, the high level of sales and the financial performance of the manufacturer of Vertex pharmaceuticals.
Niche manufacturers of drugs for rare diseases are clearly not hurting. This is increasingly becoming the focus of the larger pharmaceutical companies, too. This has led to increasing questions about the pricing of such products and recent suggestions that having the Patented Medicine Prices Review Board bring considerations of impact on overall health of the Canadian population into price setting should be encouraged.
I strongly believe that before committing to fund products with such high annual costs, greater work is required to assess the reasonableness of the prices charged. A further point I would like to raise is the need for a more comprehensive approach to the funding of all health care interventions, not just those for which there is increased funding pressure due to the activities of a commercial sponsor.
When holding discussions within the rare disease space, much of the focus is on pharmaceuticals. This is frequently the primary focus of patient advocacy groups. However, the current focus within the health care system on pharmaceuticals leads to funding decisions that typically favour such technologies over alternative health care interventions, which may provide more benefit but where profit is not a driving factor for those advocating for the coverage. We need to consider all the technologies that are out there. Many existing technologies are underfunded, yet have evidence to support their effectiveness and cost-effectiveness. Many of these do not have commercial sponsors.
Given the changing demographics of our country and the increased long-term need for home care and long-term care, the continued focus on pharmaceutical coverage is in many ways missing the major problem facing our health and social care system today. Care through hospices, home care services and nursing homes suffers from a lack of commercial interest in promoting them, and they are often overlooked by those groups advocating for health care. There is a lack of funding for research to highlight their benefits and there is limited lobbying because of the lack of a commercial sponsor.
To summarize, I would like to reiterate the points that follow.
For a publicly funded health care system to be sustainable, we must have decision-makers who are willing to make the difficult decisions not to fund specific new technologies. By failing to make such decisions in a consistent and fair manner, decision-makers are leading to the reduction in the health of the overall population of Canadians, and, I am afraid—to be direct—just not doing their job.
Fairness should be the key principle in choosing which technologies to fund, and funding technologies that deny the availability of other technologies that provide more benefit is unfair and not consistent with societal values.
Today's focus on rare disease tends to lead to a refined focus on the coverage of pharmaceuticals. However, to reach our objectives of increasing the health of the Canadian population, it's essential that sensible and rational decisions be made on a consistent basis with respect to the funding of all health care interventions, not just those with commercial interests promoting them.
Thank you very much for your time.
View Ron McKinnon Profile
Lib. (BC)
Thank you, Chair.
Mr. Coyle, I'm a little puzzled by your testimony. It seems to me you're arguing on the one hand for a national pharmacare program, but also you seem to be arguing against spending on expensive rare disease therapies.
Would that be correct?
Doug Coyle
View Doug Coyle Profile
Doug Coyle
2018-10-04 9:28
Not specifically, no.
We have a public health care system under financial stress. It's not adequately funded, and the aim of that system should be to try to improve the overall health of the population. Therefore, we need to have the courage to make decisions that we fund those treatments that are going to improve the health of the population, and not fund others if it means we will not be able to provide other health care interventions that would provide greater health care benefits.
If there are interventions for rare diseases—Dr. Midgley talked earlier about the initial treatment for the disease of interest that he's talked about—it probably would represent a net gain to the overall health of the population if we funded that properly through our provincial ministries. The problem is that if we fund therapies that are overly expensive and do not provide adequate gain, then the net impact is that the overall health of the population will decline.
For example, in the case of Soliris, it costs over $5 million more per lifetime for treating one patient with Soliris, compared to the current standard of care for that disease. The decision to fund is saying we value a patient with Soliris 40 times more than a patient with any other disease. That's the implication of that funding decision. It's saying we're funding a treatment whereby the net population health of Canada is declining because we're funding that treatment, and as a result we can't use those health care resources to fund other interventions that would give greater health benefits.
All I'm advocating for is that given the difficult financial constraints we're dealing with now, the decisions are made whereby we treat all Canadians equally, and we choose to fund those interventions that will increase the overall health of the population.
View Ron McKinnon Profile
Lib. (BC)
Wouldn't treating all Canadians equally mean giving all Canadians the health care they need?
Doug Coyle
View Doug Coyle Profile
Doug Coyle
2018-10-04 9:30
The problem there is that you're making the decision after the fact, rather than before the fact.
First you need to come up with your defining rationale for the reason we have a health care system. If it's not to maximize population health, that's fine. I'm an analyst and I'm an economist. We try to seek the best way to achieve the goals that people wish to achieve, given the need to make choices because of scarce resources. If you're looking to find another solution or another description of what the health care system should be producing, that's fine. You need to find out what that is.
No matter what you decide, you need to realize there's going to be a trade-off. If you're going to fund a drug that is not going to increase the overall health of the population, that's reasonable and that's okay, if that's your objective, but you need to define how much more value you put on funding treatments in one area versus another.
As I said earlier, lots of elements of society suggest the general public does not favour the idea of being biased in favour of one population group versus another. As a politician, you need to decide the purpose of having a public health care system. If it's not to maximize the overall health of the population, come up with some other objective, but don't say it is but you'd like to treat this other group differently, which will then not lead to that objective being obtained.
View Ron McKinnon Profile
Lib. (BC)
That's a very difficult calculus. Where do you draw the line and say this treatment costs too much, that we will leave this child alone and it then die because the treatment is too expensive?
Doug Coyle
View Doug Coyle Profile
Doug Coyle
2018-10-04 9:32
I can't talk about every rare disease, but the idea that we're going to leave them alone to die, I think, is very much what the pharmaceutical companies are telling you.
For example, in the case of Soliris—and I can very much understand that in other situations that's not the case—the difference in life expectancy is about a year, with or without Soliris.
We have to be very clear here that the pharmaceutical companies are often the most intelligent people in the room. They know how to play the system. They know how to tell things to politicians and decision-makers to make them feel they're doing the right thing. They are very creative people, but we have to remember at the end of the day that their sole aim is to maximize profit. If it's not going to maximize profit, then we, as shareholders in publicly traded corporations, could sue them. That is their objective, and therefore we need to have decision-makers who recognize that and who are able to say we need to make a decision in the best interest of the Canadian population.
View Don Davies Profile
NDP (BC)
Mr. Chair, welcome back; and thank you to all the witnesses for the excellent testimony.
Dr. Coyle, I want to start with you. This committee spent the better part of two years looking at universal, public, single-payer pharmacare. That was our recommendation. One of the central issues in constructing such a system would be the formulary and how it would be constructed.
Some of the difficulties of that are who makes the decision about what drugs ultimately get listed in a formulary. There are pros and cons of everything, but in my view, you don't want politicians making the determination about what gets covered, because that subjects politicians to pressure that may or may not be appropriate. You don't want industry to be unduly pressuring to make listing decisions.
In my mind, I came to the conclusion that what you really want is an independent evidence-based panel of experts, broadly speaking, who are making listing decisions based on efficacy and value for dollar.
That gets to the nub of the question. When you have a drug that costs, say, $500,000 a year and has a very small population that may benefit from it and the efficacy is unknown or perhaps marginal, yet that drug is very critically important to that small patient group who may have little other hope or few other options, how do we make those determinations?
Doug Coyle
View Doug Coyle Profile
Doug Coyle
2018-10-04 9:43
It's really the crux of the question, isn't it? It comes down to what we want from our health care system. It also comes down to what we, as a society, feel we need to do for specific populations or problems facing us. I've come today and said that my idea is that maybe what we're trying to get from the health care system is to maximize the overall health of the Canadian population. That's what I think the objective should be, to maximize.
If there are other issues that you want to deal with, we need to deal with that outside of the health care budget, in a sense. Otherwise, funding a drug for a rare disease that costs $500,000 per year is going to take money from the health care budget and is not going to provide as much health benefit as would be provided to other individuals through other interventions, and therefore the net population health is going to decline. That's just a fact. We can argue about that, but that's just numbers, and math doesn't lie.
The issue then is whether there is something that we actually value differently about patients with rare diseases. Is there something that we want to create a special fund for or a special process for? That is for you guys to decide, not for me. That's a process issue or a values issue.
All I can say is that society has been asked, many times, to try to trade off different aspects of populations to see what they think they should put more money towards. The research shows that rarity isn't something that society has valued. Now, U.S. politicians might decide that this is not what we, as Canada, should do, and I applaud you for that. If you let the world decide what we could do, we'd still have the death penalty in Canada, but we think that's wrong. We might want to think about what society's values are. We know what's happened down south when we trust society to express their values. Maybe you want to have something special or different here. That's a decision that politicians have to make; I'm sorry. You would have to say that we need to set aside this amount of money to have a separate process for marginalized populations or for populations that we care about, but take it out of the health care system, because all you're doing by keeping it within the health care system is making decisions that don't lead to what the health care system should be doing, which is maximizing the health of Canadians.
View Don Davies Profile
NDP (BC)
Thank you.
Mr. McFadyen, I want to turn to you. You have obviously spent a lot of time thinking about this and are very personally affected.
You must have thought about that question, but as someone very personally affected, what advice would you give this committee about how we determine how we fund rare diseases when the efficacy may not be as—
Andrew McFadyen
View Andrew McFadyen Profile
Andrew McFadyen
2018-10-04 9:46
If I listen to Dr. Coyle, I hear him saying that we value a society that will provide an exponential amount of money for people who make themselves sick over the course of their lifetime by smoking, by drinking. There's no question that you get lung cancer; we're treating it and we're putting all of those vast resources into it, but we're leaving behind those who have simply been born with a condition, and there's nothing else they can do, just as I was born with brown eyes or brown hair.
I like to believe that I live in a country where we protect everybody in need; where we protect the most vulnerable, where we have social safety nets in place that are meant to look after everybody who's sick.
In terms of looking at drugs that may or may not show appropriate efficacy, we also have to look at how we're evaluating what that efficacy is. When I sat with the minister of health one day, he said, “Listen, big deal: Billy can walk an extra 750 metres on a six-minute walk test. Why is he worth $500,000 for me?” I was able to express to that minister that it's not just an extra 750 metres; it's walking from his house to his car; it's walking from his car to his, now, place of work, if he can do it. At school, he's able to go from the classroom to the bathroom on his own, without an EA. He's able to fit more into society and become the type of person that the rest of the health care system values, and the value for dollar is actually there.
When we look at value for dollar as well, what we're not doing is looking at the overall ramifications on the health care system. We look at it as a $500,000-a-year treatment. What we're not looking at is parents leaving the workforce, mental health requirements for those parents who are dealing with these devastating consequences of these diseases, mental health of the siblings, or the amount of school time missed for siblings and families. None of that equates into that $500,000 a year; this is the value on these lives.
I feel we need to be able to look after everybody, and there are mechanisms in place to do that. If the efficacy of a drug is a little bit low or the data isn't available, we can look at funding on an interim basis and collect real-world data. Is it doing what the manufacturers say it does? Is it doing what the clinical trials are saying it does? I believe that's a system that can be put in place. I don't believe it will be a burden on the system and I feel that the overall health of all Canadians—not most Canadians—will be impacted and improved.
View Don Davies Profile
NDP (BC)
Well said, Mr. McFadyen, but I'll put a devil's advocate question to you. Surely we can't fund every drug for every condition, no matter what the efficacy or the cost. Are you saying we don't have to make any decisions in that respect?
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