Health Committee on Oct. 18th, 2018

[Dr. Karen Lee]

Yes.

[The Chair, Liberal, Bill Casey]

Mr. McKinnon, you have five minutes.

[Ron McKinnon, Liberal, Coquitlam—Port Coquitlam, BC]

Thank you, Chair, and thank you, witnesses, for your great testimony.

I'd like to ask you about priorities.

I'll start with you, Dr. Nickerson. You mentioned that your recommendation number one is to identify priorities. That sounds great, but then I started to think that it begs the question. When I think about it a bit further, I think that we already do establish priorities. There's limited funding and somebody makes choices about where that funding goes, whether it's government funding or an R and D fund in a corporation.

Here's my question to you, sir: How should we set those priorities? We can't necessarily do it on a population basis, because if you look at it in terms of the most people who have this disease, you leave the rare diseases orphaned. It's a tough nut to crack, I think. How would you suggest that we set those priorities?

[Dr. Jason Nickerson]

I agree completely with you. Really, this is about this idea of partnerships and multiple stakeholders. In order to set priorities, I think we need to be looking at what capacities we have and what kind of expertise we have domestically in different research and therapeutic areas. We need to be talking to patients, families and care providers who are on the ground every day and understanding what it is that they need. I think we also need to be looking at what are the public health priorities.

It's a real mix. I don't have a formula that I can easily hand to you. It's really about this idea of partnerships, but also about international coordination. We shouldn't be duplicating efforts and working in competition. We should be working in collaboration with what other countries are doing and working towards shared goals or different ones.

Just briefly, you mentioned that we do set priorities. I agree with you. In fact, CIHR has their research priorities that they've opened up various amounts of funding for—some of them small, some of them large. There's also an exercise that I believe was led by the Public Health Agency of Canada to identify vaccines that were priorities for research and development. I believe that's available on their website.

There are priorities that have been set that address public health needs. We should be allowing those to drive some of these experiments and alternative ways of actually developing products. It's about taking this priority that maybe has already been set and, as I said, thinking through it from start to finish and thinking about how we end up with a product that meets the needs of patients and health systems and is affordable and accessible. That's where we need to be talking about models and about the policies that we should have in place that commit us to access and affordability, so that public funding results in a return on public investment.

[Ron McKinnon, Liberal, Coquitlam—Port Coquitlam, BC]

Again, that sounds really good, but with respect, it sounds as though we're dancing around the problem here. There are a whole lot of different ways of setting those priorities and a whole lot of different people are doing it. It sounds to me as though you need—we need—a coherent mechanism for setting those priorities on a societal basis. Do you have any suggestions for what that might look like?

I invite anyone to participate.

[Dr. Jason Nickerson]

This ties into the broader question of innovation, right? We're talking about creating a Canada that innovates and is a leader in science and technology. That requires us—or government—to identify priorities that meet public health needs.

You're right: it's about choosing a few things and investing in them to deliver products that are needed, whether they are drugs, devices, diagnostics or other therapies. It certainly involves choices.

[Ron McKinnon, Liberal, Coquitlam—Port Coquitlam, BC]

Who should choose? Who should be making those choices?

[Dr. Rachel Kiddell-Monroe]

I think that maybe you can split the priorities into two sorts as well. You can talk about your national priorities, and then you can talk about your global priorities—our contribution, as Canada, to the broader world. If you're talking about global priorities we should be focusing on, we can look at the World Health Organization, which has very clear identification of some of the key issues, some of the key diseases, the key gaps, the key areas that desperately need new research and innovation around them. That's one area to look at.

I think you can also look at these international product development partnerships—like DNDi, for instance, which is identifying key priorities very much related to what's happening to patients on the ground in all of these countries, done very genuinely, without any sort of political or profit motivation behind their decisions on what they will do. They really go for the most neglected diseases.

For instance, they're now working on pediatric HIV. It's crazy, because we've been working on HIV/AIDS for years. The pediatric formulations have been extremely slow in coming, yet children are one of the largest affected parts of the population, so they said, “We have to work on this.” It was the same with my example about Chagas disease. There weren't any pediatric formulations, and this was one of the key parts of the population affected, so DNDi went to make a pediatric version, which has completely transformed the lives of so many people. I think that on a global level we can look at those kinds of priorities.

Then, as Jason said, on a national level we just need to look at the main issues affecting our Canadian population. I work in the north, in Nunavut, and I think that tuberculosis should be something extremely high on the Canadian government's agenda. We have people in our country who are suffering and dying from tuberculosis, which is absolutely unacceptable for a country as wealthy as Canada.

I think that in looking at our population health here in Canada, we can make priorities. You talk about MS. You talk about insulin. I think there are some key areas that really are affecting our population here.

[The Chair, Liberal, Bill Casey]

We have to go to Mr. Lobb now.

[Ben Lobb, Conservative, Huron—Bruce, ON]

Just to touch on pharmacare, because I know it's been touched on a few times, I think the public's view of pharmacare is being a medication for when you need it at any time. Maybe I'm wrong. I only bring it up because I know others have brought up pharmacare today. Is it rationalized medication to certain areas, or do you look at is as medication for everybody at any time?

Does anybody have any thoughts on that, or are we off topic here?

[Dr. Rachel Kiddell-Monroe]

I'm not a pharmacare expert, so I can't answer that question, I'm afraid.

[Ben Lobb, Conservative, Huron—Bruce, ON]

Fair enough.

Mr. Davis, you made a comment about people moving around, and that's another reason I brought it up. I know that in some provinces maybe an insulin strip or a testing device is paid for, and in other provinces it's not paid for. What are we to do with that?

[Benjamin Davis]

I can address both your comments relative to pharmacare and access from a provincial perspective.

It's very fragmented, very confusing, and difficult for people to navigate. If you don't have private insurance, your options are very challenging. From the perspective of pharmacare, if indeed pharmacare is rolled out in such a way that choices are not reduced and people can get access to the medication that they need when they need it, that will be a success.

It is a patchwork across the country in terms of when a drug is approved and how it gets listed on a provincial formulary, and we think that problem should certainly be fixed. That problem should be eliminated. You should not ever have to move from one province or territory to another to receive the treatment you need.

[Ben Lobb, Conservative, Huron—Bruce, ON]

There's another question I'll bring up. Maybe nobody wants to talk about it or address it, but in the recent negotiations with Mexico, the U.S., and Canada, there was an extension for intellectual property by two years. Do you have any comments on that? Is that an enhancement for companies or universities to make investments, or is that a negative? Maybe you don't want to comment on it.

[Dr. Jason Nickerson]

I can comment. The intention of a patent is to grant market exclusivity. As it was designed, it's supposed to be a reward for innovation. The intention behind it is to prevent competition. In our experience, the ways in which we have been able to access lower-cost medicines is through competition. Patent extensions will keep prices higher. I think that's clear, and I don't think that it incentivizes companies in the way that we think that it does.

[Dr. Rachel Kiddell-Monroe]

Just to underscore that point, patents have not been shown to be, as claimed, those drivers of innovation. We have innumerable scientific peer-reviewed reports showing that. Even The Economist on its front page has said that patents are actually a block to innovation, so any extension will—

[Ben Lobb, Conservative, Huron—Bruce, ON]

But they're quite effective in the courtroom—

[Dr. Rachel Kiddell-Monroe]

Absolutely.

[Ben Lobb, Conservative, Huron—Bruce, ON]

—and I think maybe in the laboratory.

I have one final question, if I have time. I know that the MS Society had a real challenge a number of years ago with the public and political pressures of the Zamboni treatment, or whatever they wanted to call it at that time. Millions of dollars had to be invested into proving that it didn't do anything, I guess. All of those are my words.

What do we do to prevent something like that from happening again? Do you think it's good for society to have a public debate about treatment like that, or the lack thereof?

[Dr. Karen Lee]

That's a really good question. We as an organization really struggled during that time to understand what to do. Our scientific community very much indicated that this probably wasn't going to work. However, at the end of the day, we really had to do the science, to do the good science, to show people that this wasn't going to work, so I don't want to say that millions of dollars were wasted in the sense that it didn't work. Unfortunately, quite a few drug trials become negative too. At times in science you do need to do that work to show that it doesn't work, versus always wanting to look for the positive.

Really, I think what we recognized as an organization, what we learned from it, was the education of the public about what science is, how people can be part of research, and the importance of research investment. What we learned from that Zamboni time frame, shall we say, was that we weren't really communicating the benefits of science and how people can be involved in research. That's really where we changed as an organization, to really involve patients in our research strategy. Prior to that, it was purely the scientific community.

I think that's the shift we're seeing through CIHR through the SPOR initiative. At the same time, like many of the health charities, we recognize now that it's not just the scientific community we have to engage when it comes to research; it's the entire population of stakeholders, including the patients, so they can have a complete understanding of the benefits of research. They can know what's coming down the pipeline, the benefits of clinical trials, what they can do for people, and the investments we need to make.

[The Chair, Liberal, Bill Casey]

Thank you very much.

Mr. Saini, you have five minutes.

[Raj Saini, Kitchener Centre, Lib.]

Thank you to all for coming here this morning.

Before I begin my questioning, I want to preface by referring to something Dr. Nickerson said in his opening comments that I think is very important. He mentioned that to develop a new chemical entity, it costs between $144 million and $216 million.

From some of the studies I have read, especially from Tufts University, which has kept an ongoing accounting, I guess, of the cost of new drugs right now, it can go from anywhere between $1.6 billion to $2.6 billion. However, that factors in the cost of failure. What you're giving is a more accurate price of what the development cost will be as opposed to factoring in the drugs that in many cases, 90% of them, don't make it past phase I clinical trials.

Mr. Lobb asked a good question about whether or not there's enough money and what the cost is. I think there is enough money. I just think it's the way we use that money. It's not resourced properly. Ms. Kiddell-Monroe mentioned TB, which, as a pharmacist, I know.... I mean, we're dispensing the same stuff I read about in pharmacy school. I'm not going to say when I graduated, but it's not a good sign when the drugs you read about when you were in pharmacy school are still continuing to be used.

Is there a way in which we can coordinate domestic and international research? Even from my own readings—I hadn't realized this—there's a lot of global philanthropy out there, a lot of money being poured in, but my feeling is that this money is being poured into individual silos or organizations that have been given a mandate that the money has to be used for a particular purpose. That's fine, but there is no conversation happening in between different organizations and universities or other members of the ecosystem.

To Dr. Nickerson and Ms. Kiddell-Monroe, is there a way we can coordinate domestically and internationally? One of the things I'm a big proponent of is open science and making sure there are collaborators. Is there a way?

[Dr. Rachel Kiddell-Monroe]

I absolutely think there's a way. I think you really hit the nail on the head in that one of the problems is that we see everything working in silos. We have a complete lack of transparency between different institutions.

I want to bring up the Neuro in Montreal. They have started an extremely interesting initiative. The head of the Neuro got so frustrated with the slow development that he said they were going to open it all up. They were going to open up all their data to everybody to see if they could speed things up. They saw really dramatic changes in the ability they had. We call it the “open science” approach. The open data has already made big transformations there in terms of the rate at which things are going.

Think about applying that on a larger scale. Just imagine what we could do. I keep going back to DNDi, but it really is one of the premium examples of how that openness and that sharing and that breaking down of the silos has resulted, in a very short space of time in pharmaceutical drug development terms, in incredibly important new drugs, whether they've been combinations of existing drugs in a new way, which was one of the first things they did for malaria with artemisinin and then the combination, or very new drugs, such as the one produced for sleeping sickness.

I think that collaboration requires openness. It requires sharing of data. It requires collaboration between academic institutions. Again, that's why I go back to universities and the importance of universities. Also, then, from the federal side, there's the importance of the public funding that's given by the federal government to these institutions. You can put conditions on that. You can say that we will give you the federal funding, but you have to have global access licensing and you have to make sure you're open and transparent with your data.

You all know how difficult it is to get data on research. If I go to a university and try to find out what they're researching, it's practically impossible for me to do it.

Therefore, I completely agree; I think there are opportunities for collaboration. I think we have to go out and look for them and also create them.

[Dr. Karen Lee]

Perhaps I could speak a bit about an international initiative that we have embarked on with five other MS societies worldwide. We recognized that there was a need to address the issue of progressive MS, which is the most debilitating form of MS. At the time, there were no drugs available. Five of the MS societies came together globally, and we formed an alliance. We each contribute at least one million euros. We now have a 30-million-euro initiative.

What's interesting here is that we also work with global industry players. They also are contributing at a global level. When we talk about open access, our aim is to make sure that the data being generated in this alliance globally is also available in open access. For instance, there's a researcher out of the MNI who is being funded. Interestingly, he's analyzing data from clinical trials from industry. They have let go of their industry data and have provided it to him to ensure that he can do the proper analysis. I think when we talk about manners of partnership and collaboration, that's a great example of how we're doing it at an international scale, using the resources within the Canadian community as well as partnering with industry. I know we've heard a lot of negativity around industry, but I think there are ways to partner to ensure that we reach our mandates of better access to treatments and developing new treatments.

[The Chair, Liberal, Bill Casey]

Thank you very much.

We'll now go to Ms. Moore for three minutes.