Health Committee on Oct. 16th, 2018

[Marc LePage]

As a general statement, whether it would be government science or academic science, I think we all collectively benefit from open access to general information. The idea of publishing, sharing and engaging more broadly is very potent.

Occasionally people can use that information to develop products, but there's a lot of work. I think it's rare for something to be developed, then there is a product and then it's all done. There's the beginning of an idea, maybe, but there's a lot of work to be done.

[Dr. Aled Edwards]

There's a lot of evidence that sharing locally creates ecosystems that can more quickly uptake the research. There is a lot of local economic benefit from projects that share locally, because the best intellectual property walks on two feet, so the scientists can walk back and forth and discuss.

Also, other governments are sharing their results. The American government is very good. I don't think we should be wimps. We should be as competitive, and if we want to start companies, start them. Instead of complaining that other people are taking our stuff, we should take their stuff.

[The Chair, Liberal, Bill Casey]

Okay. Your time is up. Now we go to Ms. Sidhu.

[Sonia Sidhu, Liberal, Brampton South, ON]

Thank you, Mr. Chair, and thank you to all the panellists for being here, especially Dr. Edwards. Thank you for your great efforts, which are definitely helping to lower drug prices.

The positive impact of your recommendation seems clear when it comes to approving and making drugs for new diseases less expensive. How will it be beneficial for developing treatment for well-known and common diseases, like diabetes? That's a big burden on the health care system, to the tune of $27 billion. How can we develop it more efficiently?

Also, I know you said we need a change in the federal policy. Do you think we need more than what is in Motion No. 132, presented by Mr. Saini? Do you think we need to include more policies in it?

[Dr. Aled Edwards]

I suspect the bigger experts are sitting here in Hamilton. If I might reiterate, the model we're proposing as researchers is to make a better world in the future, where the medicines we invent now will be affordable. You're saying that the medicines now are very expensive and asking how we make the existing ones affordable.

It's harder, because we tacitly endorsed high pricing by all the things we put in place to do research. We allow the universities to patent. We think venture capital companies are the best thing ever. The consequence of that is high pricing. Other countries—Brazil, for example—nationalize the production of essential medicines and make them affordable to their people. I don't know if that's a model that would work here.

There are other ways, through public health, to tackle existing prices. We could also negotiate harder. Honestly, though, the pricing of medicines is decoupled from this research stuff we do, so I don't think I should speak too much about what I don't know.

[Sonia Sidhu, Liberal, Brampton South, ON]

Mr. LePage, you said the six centres are working together. Do they share any information? Is it open information or closed?

[Marc LePage]

Yes, in general in genomics there's always been a history of putting your data out almost as you generate it and making it available in the evolution of the science.

There was an earlier question in this area, but the challenge for us—and maybe our contribution to the drug pricing pressure—is to establish an independent diagnostic facility so that you can assess your patients and determine which patients should get which drug on objective criteria, as opposed to maybe a marketing push or manipulation. Our sense of where we can intervene might be on the characterization of the patients really objectively, so that health care systems can more easily deal with those cost pressures.

[The Chair, Liberal, Bill Casey]

I believe Dr. Yusuf wanted to make a comment.

[Dr. Salim Yusuf]

We need to realize that health is not all about drugs. A large part of health is how we live, how we eat, how we exercise and who we interact with. Diabetes is a disease of societal change, so investing in research that leads to improved health behaviours is actually the fundamental aspect, and that's something companies won't do. We need to do it ourselves out of the public purse. That investment simply is not happening in Canada.

The second part of it is about drugs. In the short term, or even in the foreseeable future, we are not going to change the system of patents and the idea that industry is for commerce—and commerce means generating money. They will do what is needed within the limits of the law.

There is a short-term issue and a long-term issue. We can't do anything about the short-term issue in terms of what drug prices are going to be during the patent period. However, remember that if a drug is of benefit, it will be used for 50 or 100 years after the patent has expired. This is where, in Canada, we've failed. Our generic drugs are among the highest-priced in the world. They're five to 10 times more costly than those in the U.S. and several times more those in the U.K.

This is something this committee can legitimately address, and one of the things may be what is done in Brazil, where you have a national pharma-producing plant that produces essential drugs at low cost.

It is possible to tackle the long-term issues, but much tougher to deal with the short-term issues.

[Sonia Sidhu, Liberal, Brampton South, ON]

Thank you.

[The Chair, Liberal, Bill Casey]

Time is up. Now we will go to Ms. Moore again.

You have three minutes.

[Christine Moore, NDP, Abitibi—Témiscamingue, QC]

Thank you very much, Mr. Chair.

I'm very interested in an issue that the Genome Canada representatives didn't have time to explain in detail, namely the issue of rare diseases and the coordination of their treatment, pharmaceutical or otherwise. I'd like to give this organization a chance to tell us more.

[Dr. Cindy Bell, Executive Vice-President, Corporate Development, Genome Canada]

Thank you very much.

I think that one of the key things that is required in Canada at the moment is to provide opportunities for Canadians to get equal access to emerging new technologies such as genomics, as Marc LePage described is going on in the United States and the U.K. In order to do that, there are many steps. One of the things that Aled has been promoting, open access, is really about sharing data as well, so that we can have access to different kinds of clinical treatment, and it doesn't matter where it is.

Globally, we need to be able to have access to a broad range of data and to share that. For patients to benefit in Canada, we need to have access to data of patients around the world. We have been part of a large initiative called the Global Alliance for Genomics and Health. It's also based on open access and sharing of data,

You need to do it at the research level as well as at the level of access to the actual clinicians.

[Christine Moore, NDP, Abitibi—Témiscamingue, QC]

So that would mean, for example, that a doctor in a rural area could have access to data related to a disease and the patients who suffer from it, as well as the results of the treatments that have been tried, which would give the doctor a better idea of this disease that he or she is probably hearing about for the first time ever?

[Marc LePage]

Exactly.

The objective here is to be able to connect to a network of collaborators who have treated patients with the same disease, to find families who are victims of the same circumstances and to promote solidarity not only between these families, but also between health professionals and perhaps specialists. That way, this network would allow the regional doctor to know what is happening across Canada and even, as Ms. Bell just said, on the international scene, where we also want to establish solidarity in this regard. We are actively involved in this project.

[Christine Moore, NDP, Abitibi—Témiscamingue, QC]

Okay.

[Marc LePage]

In practice, a pan-Canadian system has yet to be developed. The current system is still based on 10 health networks. Clinically, we are not yet able to exchange patient data, which we are already doing for research purposes. This is the structural challenge we are currently trying to overcome.

[Christine Moore, NDP, Abitibi—Témiscamingue, QC]

I imagine that this is particularly crucial if the number of cases of certain diseases is low. It is therefore important that the data doesn't remain in a vacuum in a provincial database. In this regard, the federal government could play a leadership role in advancing the issue of clinical information sharing.

[Marc LePage]

It could indeed play a role at the organizational level. For their part, the provinces are autonomous; they participate when they want. However, they are increasingly realizing the benefits of increased collaboration. If we fail to share and consolidate this data, everyone will suffer because we will not achieve as good a result as we had hoped.

[The Chair, Liberal, Bill Casey]

Thanks very much. Your time is up.

We have a few minutes left, and I believe that committee would like to use those to ask questions, so we're going to have a four-minute round here and a four-minute round there, and a two-minute round for the NDP. If everybody stays on schedule, we will be all right.

Mr. Ayoub, you have four minutes.

[Ramez Ayoub, Liberal, Thérèse-De Blainville, QC]

Thank you, Mr. Chair.

Thank you to all the witnesses.

I'll be quick because I only have four minutes for my comments.

What our witnesses are saying is very interesting. Based on what I'm hearing from them, I wonder if we shouldn't approach the issue from a completely different angle when it comes to administration and research—but perhaps I'm naive to think so.

Large countries, such as the United States, India and China, are doing research just like us. Do they actually communicate all the information they collect? It seems that they do, in some cases. So what is the added value for Canada?

Canada is often told that it is a small country with a small market and has no power or influence. What is the benefit to Canada of spending millions of dollars to maintain its administrative structures for drug management and research approval and to continue to want to become a leader in the research community?

Following on from what Dr. Yusuf was saying, it may be better to take advantage of what is already being done elsewhere in research and production, what is already approved by such industrialized countries as ours, which has a comparable geography and standard of living to these countries. We could then invest more in education and behaviour change, and prevent companies from giving Canadians bad habits.

I'll stop there. I took one minute and fifteen seconds of my time, which gives you three minutes to respond, Mr. Edwards or Dr. Yusuf.

[Dr. Salim Yusuf]

This is a question that we have all been grappling with, and that every country other than the United States grapples with.

I think the answer is very simple. Health is a global problem, and we're a rich country, so we need to do our share to help solve a global problem. That will help us. Similarly, research done in Korea or the U.K. or the U.S. will help us. We can't be so selfish and say we won't do anything.

The second thing is that any findings or any discovery, whether it's from Tokyo or Toronto, has to be adapted to the Canadian health system. That research can only be done in Canada. This is why the translational part definitely must be invested in.

Finally, countries that invest in research benefit from the advances of research first. They have the expertise to attract dollars from outside. Eighty per cent of my research funding comes from outside the country, because our group has the expertise. Improving our own health requires us to invest in ourselves. As a global citizen, we need to invest.

[Ramez Ayoub, Liberal, Thérèse-De Blainville, QC]

I'll take you at your word, Dr. Yusuf.

Without taking anything away from scientists or research, because I strongly believe in that, I nevertheless have the impression, when I see all this, that we are trying to treat the disease rather than attack the habits that create it. That's the balance I'm trying to find. I agree that there is a need for research and leadership in this area, but at the same time I have the impression that there is a strong focus on the solution and not on the source of the problem.

[Marc LePage]

The focus is indeed on the disease rather than on healthy lifestyles. The latter is an underdeveloped area, and Dr. Yusuf mentioned this. This is precisely part of the contribution we can make in the long term, and it is an aspect that is becoming increasingly important as our population ages.

[The Chair, Liberal, Bill Casey]

Thanks very much.

We have to move on now to Mr. Webber.