Evidence of meeting #12 for Health in the 42nd Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was diseases.
A recording is available from Parliament.
4:50 p.m.
Liberal
Ramez Ayoub Liberal Thérèse-De Blainville, QC
Mr. Herder, did you want to say anything on the issue?
4:50 p.m.
Associate Professor, Faculties of Medicine and Law, Health Law Institute, Dalhousie University, As an Individual
That kind of international collaboration will be a lot harder if we have multiple payers and health technology assessment bodies. I think it adds to the argument for a national decision-maker so that we can collaborate. You're seeing this already to some extent when a few European countries recently decided to join up to make decisions around rare diseases therapies for a whole bunch of reasons, such as improved bargaining power and to collaborate.
I think that makes the case for national pharmacare here, as well.
4:50 p.m.
Liberal
4:50 p.m.
Capital Health Research Chair, Faculty of Medicine and Dentistry, University of Alberta, As an Individual
I'd like to reiterate that in those international relationships and through collaboration, a national pharmacare can not only contribute data, but that frequently with orphan drugs the companies control almost all of the evidence that's available. By having a national pharmacare that negotiates, you can negotiate not only price, but also the site of the data they hold and accumulate through their registries, to help Canada more rapidly get an understanding of the true value.
I think there are a lot of opportunities in what Dr. Wong-Rieger was describing, not just at the regulatory level but at the national pharmacare reimbursement and related research level as well.
May 30th, 2016 / 4:55 p.m.
Conservative
Colin Carrie Conservative Oshawa, ON
Awesome. Thank you very much.
I could go on all day with something like this.
Professor Herder mentioned something about a national decision-maker. This is one of the things that I struggle with, and I know about all of the great work that you've done, Dr. Wong-Rieger, in the past on rare disorders, which I thank you for.
My colleague has mentioned private insurance versus the public purse, and we've had different advocates here in that regard. Some do want that public system focused on. I know that Dr. McCabe was with the National Health Service, and it would be great in Canada. I've always thought that we just needed one decision-maker to work that out because all these silos are a bit of a challenge.
My concern is, who decides, and what do they base that on? I've had constituents in the past... I remember when Remicade came out, which I think might have been the drug you were talking about. Some of these make a huge difference. Sometimes a private insurance company may make that more available, and it can be a life changing thing, whereas the national system may take a lot longer to get that.
How do you see a balance on this system, and who makes that decision?
4:55 p.m.
Associate Professor, Faculties of Medicine and Law, Health Law Institute, Dalhousie University, As an Individual
Is this for me?
4:55 p.m.
Associate Professor, Faculties of Medicine and Law, Health Law Institute, Dalhousie University, As an Individual
I think it's a great question.
I think there would have to be a lot of follow-up work about exactly how that body would be constituted, with representation from provincial decision-makers and other kinds of experts. We'd need to do a lot of thinking about how exactly that would look and how its independence would be protected from both outside and within government. I think a lot of careful work would be required.
The basic point to take away from my remarks is that there's a question of scale and capacity in Canada given the silos that exist. You see private insurance and some of the big ones in the United States—Kaiser Permanente comes to mind—that do have the capacity to critically evaluate evidence as it accumulates over time. I would venture to say that is not the case for private insurers and most provincial decision-making bodies in Canada.
We need to scale up for that reason and to improve our capacity both to negotiate better prices and to better appraise the information as it's coming, building on this approach I think CADTH has, but which is undergoing some rethink around these new kinds of rare disease therapies, as well.
We need to scale up and build capacity first, and a national body seems the right approach. Then we'd have to do a lot of careful work about how to constitute that with the appropriate representation. I should add that this feeds into the underlying legal issue around constitutional responsibility around health care, and that to some extent this would drive how this body would be created at the national level, as well.
4:55 p.m.
Conservative
4:55 p.m.
Associate Professor, Faculties of Medicine and Law, Health Law Institute, Dalhousie University, As an Individual
I see a public body as more able to strive towards key goals around fairness and access such that these really tough decisions.... Many of them will be challenging decisions. If you are a patient without any treatment options, you are going to consider that medicine essential, but the evidence base at that point in time and the price at that point in time may make coverage prohibitive.
I think if we are really thinking in terms of those public health care kinds of values, a public body is better suited to take on that tough decision-making process than a private one.
4:55 p.m.
Conservative
4:55 p.m.
President and Chief Executive Officer, Canadian Organization for Rare Disorders
I would not disagree with that. Let's put it that way.
I think for patients, and especially with higher-priced medicines, innovative medicines, we have always looked to the private drug plans because they can make these drugs available to the patients quickly. What we want to do is make sure we have a public system that can respond appropriately.
I don't want to bring the private drugs down, but I can't disagree with the fact that we need to have, especially in this arena, a single system. That single system is going to be able to take the evidence and to develop a plan.
To be honest with you, we see the private insurers going that route as well. The two of us just came back from Washington. At an international society meeting on patient-reported outcomes, two of the biggest private insurers in the U.S. were talking about the HTA approaches they are bringing in.
We have met recently with private insurers in Canada who are looking at these kinds of managed programs.
I will say that I shudder a bit, because they do not necessarily have the expertise at their disposal in order to do as good a job as the national agency that we have.
As much as we may deplore CADTH, in terms of its coming up with right decisions in as timely as possible way, it stands as one of the best HTA agencies in the world.
5 p.m.
Conservative
5 p.m.
President and Chief Executive Officer, Canadian Organization for Rare Disorders
It has huge potential. We already see a company like Manulife saying, “We will wait for CADTH to make a decision before we fund some of these drugs.” Well, okay, are you going to fund CADTH to do that as well? Quite frankly, we don't think CADTH is looking at the same criteria as the private plans are, so if you are going to do that, you are going to have to expand it.
We would rather see a single body that can do that. There is no doubt about it. Whether there will still be private funders, I think that is a different question.
Germany has public and private plans, but they have one HTA system. They have one national registry. They have one monitoring system in order to collect that information.
At the end of the day, who puts their money into a plan in order to get the benefits from it is very different from who should actually have an overarching plan that would make the recommendations about drugs and how they are going to be monitored, and have—as I think everybody says—a combined registry that would allow us to track all that information.
At the end of the day, if there are some private plans that are going to be funding differently and people want to buy into those.... I don't know enough about it to make a real recommendation, but all the things we are saying.... I think having a national system that would actually do that is essential, especially for rare diseases.
5 p.m.
Conservative
5 p.m.
Professor, Department of Medicine, and Department of Epidemiology, Biostatistics and Occupational Health, McGill University, As an Individual
I can hardly wait.
5 p.m.
Conservative
Colin Carrie Conservative Oshawa, ON
I appreciate the work you guys have put into this, especially Prof. Herder. You did work on Vanessa's Law. I think a lot of it is the collection of data afterwards, the on-the-ground data you can collect with this.
The potential for registries, I think, is phenomenal in this country. What is your opinion on that, Dr. Tamblyn?
5 p.m.
Professor, Department of Medicine, and Department of Epidemiology, Biostatistics and Occupational Health, McGill University, As an Individual
Canada leads in terms of the post-market surveillance area, in terms of comparative safety and effectiveness of drugs. We are the world's leader in the analysis of that. We have the drug safety and effectiveness network, funded through Health Canada, which uses the repositories of population-based data in each and every province to answer questions about the concerns about the safety of drugs. This is something that is a huge success story internationally for Canada.
We don't have the richest data. We don't have patient-reported outcomes in there. I think we need that. We don't have information such as lab values and other such rich clinical data.
I guess what I am trying to say is that we are collecting that. We put it in repositories, and then we don't use it. We have the capacity. Now it is just the political leadership, I think, quite frankly, that we need.
We do have a central body that does a common drug review. Ontario and Quebec do their own review, I think more for political reasons than anything else.
What we don't have is the machinery for this proactive post-market surveillance system, a strategy that puts it in place and someone to lead it. Who is going to be responsible for that? We have all the parts. We just need the political leadership and the strategy.
This international network is absolutely going to be essential for rare diseases, but the other thing that is important to consider is that there may be some real benefit in some national role for negotiating prices. I think everybody would be appreciative of that, especially for what you might call the bare essentials. Absolutely, we could do so much better.
I forgot my last point, so I will just stop there.
5 p.m.
Liberal
John Oliver Liberal Oakville, ON
Dr. McCabe, I had the privilege of serving on the Ontario Health Technology Advisory Committee for a number of years back when Les Levin was involved, and your cost-effectiveness research has been quite helpful.
You made a comment in your report about how we would start up. I have five minutes and three questions, just so you can time your answers. There is advice for us in this report as to how we would start up the formulary. I think you said a number would be grandfathered in. Is there another system like the one in the U.K. or another that you would recommend we adopt as our initial formulary while we sort through who would be developing...? This is for general-purpose drugs and not just for orphan or rare disease drugs.
5:05 p.m.
Capital Health Research Chair, Faculty of Medicine and Dentistry, University of Alberta, As an Individual
I'm quite a fan of what the Netherlands do, actually. I think the U.K. does lots of good things, but it also has a very long history, which constrains things it wants to do. It has a very, very big formulary, containing about 25,000 different things. The Netherlands kind of started later, and actually I think they've been pretty smart, so I would go look at the Netherlands. I also think IQWiG has been very clever, in Germany, and Belgium's system is good also. Those are the three that I would go look at, because I think all three of them are smart in different ways.
5:05 p.m.
Liberal
John Oliver Liberal Oakville, ON
Do you feel they're fairly translatable? Could you take the formulary of the Netherlands and in some way start up with a formulary for Canada? If it needed to be fine-tuned, could CADTH handle a national formulary? I asked that question when they were here, and they said yes, that would be right in their bailiwick. Is that where you would recommend they be?
