Health Committee on May 30th, 2016

[Dr. Christopher McCabe]

I would agree. CADTH would be an excellent lead organization to put that together. Very briefly, what a health system pays for is an expression of a society's social values. You can't just pick up somebody else's, because it's about what Canadians value. There's going to be a large overlap, but you're going to have to be sensitive to social values around the edges. There are going to be some things you don't care about, and some of the things they don't care about, Canadians are going to care about. For the core things like essential medicines, I think you're there. With regard to the process for what comes in subsequently, I think CADTH is exactly the right organization. Knowing what I do about their direction of travel, I think they're only getting better in that realm.

[John Oliver, Liberal, Oakville, ON]

Okay, thanks.

Coming back to the discussion of private-pay and orphan drugs and rare drugs versus a public system, you said in your report that a national pharmacare program would eliminate the huge variation in the time to access orphan drugs, implying to me that this would be a better, more robust model, and that there would be less of a dichotomy in how they come forward. However, you thought it needed to be tied into conditional licensing and a national reimbursement process. Could you just talk about that a little bit, and would you offer maybe a slightly different view than Dr. Wong-Rieger did on a private versus public system, and the market?

[Dr. Christopher McCabe]

I think in the orphan-drug space, the prices of these technologies are so high that relatively few people have the ability to sustain the premiums they have to pay. I think as a general principle, medicines for severe orphan conditions should be on the essential medicines list and should be provided publicly. Access to them shouldn't be a function of your socio-economic good fortune. The public should pay for them following very structured, clear criteria. It's not very good to use the routine data infrastructure to get the evidence and the clear clinically driven but value-informed basis for stop-starts with those technologies. If we don't do that, I think we're missing a real opportunity.

[John Oliver, Liberal, Oakville, ON]

The other point you raised on orphan drugs, which I thought was really interesting, was that a national program could operate as a mechanism for raising the quality of care, because caregivers and treatment centres for those conditions, which know how to effectively manage them, are usually scarce, so if you tie the pharma component to those, you could get a great outcome. Are you aware of the jurisdictions that have done that? I get the theory of it.

[Dr. Christopher McCabe]

We did it in the U.K. It's probably the best example. If there's one thing I'm really proud of in the U.K., it's NHS' outstanding specialist commissioning program, which I think has genuinely been world-leading. They used it to drive up standards and reduce variations in the package, and therefore the quality of care. It's not right that we see families having to move to another province to get the best care for their disease. That's not what we want. I see one of the kind of fortunate benefits as being able to improve quality of care for these families. It's not the sole reason for doing it, but it would be foolish not to seize that benefit.

[John Oliver, Liberal, Oakville, ON]

How would you set that up? How would you envision a national model in terms of rare diseases and orphan drugs?

[Dr. Christopher McCabe]

Informally, and correct me if I'm wrong, these networks kind of exist, but they don't necessarily get the resourcing support they need to really leverage the benefits. I think if you go to those informal communities and ask who the best people are and what optimum care would look like, and back that up with contracting and resources, I think they'll tell you what it should look like, but with national resources rather than provincial or territorial resources; it's much more feasible than in our current siloed world.

[Dr. Durhane Wong-Rieger]

Can I just add to that? I think that's an excellent point.

What's happening in Europe now is that the EU has just announced expert reference networks. These are grouped around 40-some conditions. Some of them are rare, some of them are not, but usually they're around different kinds of conditions. That's exactly the concept: it's within these...and they're right across Europe. They don't just work within the boundaries of one country, they actually span Europe. Clinics have to bid for them. They bring together all the experts from around Europe that would be part of it. Most of them are virtual centres, but there are actual physical sites for most of them.

To be honest with you, there's a great model for it. They have criteria, they have evaluation, and in order to qualify and to get the funding for them, they have to meet a very high standard. I think we could use that model in Canada. Even more importantly, as we talked about this past week, if we got our act together, and we actually had Canadian reference networks, we could actually make them part of an international reference network.

Again, we would have the opportunity to do that. We don't have to reinvent this. The models are there. They're built exactly, as Dr. McCabe says, on the kinds of networks we have, but in many cases, except for hemophilia and some of the others, they are much more informal than they are formal.

[The Chair, Liberal, Bill Casey]

Mr. Davies.

[Don Davies, NDP, Vancouver Kingsway, BC]

I think we should set up a national formulary right now, put these five witnesses on it, and be done with it.

[Voices]

Oh, oh!

[Don Davies, NDP, Vancouver Kingsway, BC]

To pick up on Dr. Wong-Rieger's last comment about models, a lot of jurisdictions in the world are struggling with the same issue. I think some of you have answered this, but I'd like to ask Professor Herder if there is a jurisdiction he would point this committee's attention to as a jurisdiction that would be particularly helpful for us to examine as a model for Canada.

[Prof. Matthew Herder]

This is not a novel answer, but I think it's really important to pay attention to the U.K. This is because of its obvious strengths as a national pharmacare example, and the kinds of things it's done that Dr. McCabe just mentioned, but also because of some of the tribulations associated with it. There have been challenges. When you concentrate decision-making in one place, the pressure on that organization to keep performing and make evidence-based decisions that aspire to some level of fairness will also increase. No system will be perfect, and I think there are important lessons about the institutional independence of NICE in particular that are worth paying attention to.

[Don Davies, NDP, Vancouver Kingsway, BC]

Dr. Tamblyn, I don't know that you've given us your suggestion about a jurisdiction that might be particularly instructive for us.

[Dr. Robyn Tamblyn]

I would agree with Chris's comments on the Netherlands and also the U.K. I think what's really interesting with the U.K. right now is that they've set up four e-health centres. Those e-health centres are actually taking clinical trials and linking them to population-based data so they can look at these longer-term outcomes. The comment about the statins was fascinating. They showed that the benefit of the statins, if you start earlier, increases with time, whereas if you start at 70 or 75, forget it; you're throwing good money after bad.

These are the kinds of things that are just fantastic. I can see more and more intelligent population-based models for actually getting the best value for your money coming from that environment.

[Don Davies, NDP, Vancouver Kingsway, BC]

I think I only have about a minute left, so I'll play Alex Trebek here.

As you were all talking, I was taking some notes about drivers of the system that if we get right, if we design a Canadian system, could be cost-savers. I have: cost-related non-adherence; a national formulary, with some bulk buying; perhaps exclusive market access for certain drugs; single administration or centralized administration instead of maybe thousands of private plans; better prescription practices; and better evidence-based evaluation and efficacy assessment.

Does anything there jar anybody? Are those basically the factors? Am I missing something big, or is anything wrong there?

[Dr. Durhane Wong-Rieger]

I think everything you've said makes great sense.

This is not something that's sorely missing, but it's something I'd like to really emphasize and that Professor Herder and Chris also talked about, and that is, when we bring in these drugs, we actually need to have a robust coverage with evidence to document the program and—

[Don Davies, NDP, Vancouver Kingsway, BC]

Yes.

[Dr. Durhane Wong-Rieger]

That means that a lot of these drugs come in with conditional approvals, and that's really important. I think the conditions, as you say, under Vanessa's Law, allow us to be able to hold companies accountable. But the other thing is to engage the patient community, because we get a lot of push-back that says, gee, what if we've started drugs, and we have stop criteria, and the patients don't want to come off them—

[Don Davies, NDP, Vancouver Kingsway, BC]

I'm going to interrupt you. Thank you for that post-market assessment, but I have a question. If we do those things, do you believe we can provide universal coverage for Canadians and save money over what we're paying today?

[Dr. Durhane Wong-Rieger]

Of course.

[Dr. Christopher McCabe]

What time period are you thinking in terms of the investment? Over a decade, I think yes, you will, but—

[Don Davies, NDP, Vancouver Kingsway, BC]

After the original investment, over time we will save money?

[Dr. Christopher McCabe]

Yes. Ten years from now, I think you would see real differences in the utilization of emergency care services by the socio-economically....

[Don Davies, NDP, Vancouver Kingsway, BC]

Professor Herder...?

Dr. Tamblyn, I think I saw you nodding.