Health Committee on March 5th, 2013

[Dr. Aled Edwards]

I think that's the ideal world, but then we have reality, and so it won't happen.

[Wladyslaw Lizon, Conservative, Mississauga East—Cooksville, ON]

It's utopian probably.

[Dr. Aled Edwards]

Exactly.

What you have to find is common interest to go out there. What we've been able to do is attract the pharmaceutical industry. They paid $100 million to us to go into the unknown and not patent anything because it's the carrot that will allow academics to go work on the unknown. In large part, we would go there if there was the funding, if there was a mechanism to fund work in the unknown, but the way we allocate funding is by peer review, which is pretty conservative. I believe there's a huge appetite in the pharmaceutical industry, which spends about $30 billion globally on R and D, to spend money in basic research in the right areas.

[Wladyslaw Lizon, Conservative, Mississauga East—Cooksville, ON]

Professor, if we took the pharmaceutical industry completely out of the picture and did that research in order to find out the causes of disease, then we wouldn't need pharmaceuticals. Is this something that science can go to find out?

[Dr. Aled Edwards]

Perhaps, but unfortunately the way we've let industry evolve is that pharmaceutical companies have a lot of skill sets that we no longer have in universities. It's just how the ecosystem evolved. So there are some problems that can only be solved in this part of the curve, in the unknown, by combining forces; by combining monetary forces, intellectual forces, and technology forces.

In America they can't do it because they all say, “Who's going to own the patent?” and then you talk to lawyers and then you shoot yourself. In the EU, it's “Who's going to do it?” and you have to get Lithuania and everyone to sign a common agreement and that'll take years. We can be nimble here and we've done it before. So on the insistence that pharma funds half, I think we have a great opportunity for Canada to be a leader of early-stage drug discovery in that area, provided we get cash from industry to do it, and no patents, and they will do it. And Canada will be the magnet for early-stage drug discovery, I'm convinced. We did it once. There are new projects starting with Pierre. I'm very optimistic.

[The Chair, Conservative, Joy Smith]

Thank you, Dr. Edwards.

Thank you so much. Those were very insightful comments.

We'll now go to Dr. Fry.

[Hedy Fry, Liberal, Vancouver Centre, BC]

Thank you, Madam Chair.

You've presented a sort of Catch-22 situation in terms of getting pharma to put in, say, 50% of the money, not filing patents and working in those unknown areas we talked about. But about the unintended consequence of pharma, which puts in that chunk of money, saying it owns this information and is not going to share it with anybody else? That is where my thinking is going. Instead of opening up that information so everyone can see it and benefit from it, what we're doing is selling information to the highest bidder who then would patent it, own it, and go ahead and do it.

[Dr. Aled Edwards]

This is what the public sector is incredibly important for. If pharma got together, like the oil companies are getting together in Alberta to do the environmental stuff with no public sector involvement, who knows what industry would get up to? In these consortia, we're a registered charity. They give us a charity, there's a board of directors on which Genome Canada sits, and CHR, the Wellcome Trust in the United Kingdom, and we have governance rules that do not allow that to happen. So we set up a corporate structure that absolutely forbids it, and actually, pharmas are more willing to share than professors on many occasions.

[Hedy Fry, Liberal, Vancouver Centre, BC]

Just to follow that trend, if you have rules that prohibit pharma from doing this, what is pharma's incentive for wanting to put in 50% of the dough?

[Dr. Aled Edwards]

Pharma's incentive is that its share price since 1950 has been dropping. Its discovery of new medicines has been dropping. It doesn't have the skill sets to work in the unknown. It thought professors should do it. So this is a relatively small amount of money for it—$10 million or $20 million—but it leverages funds from other pharma and it leverages funds from industry. It's paying $1 out of every $10 and it's getting completely innovative information and “freedom to operate” is the business word, because then they can take it and run internally.

[Hedy Fry, Liberal, Vancouver Centre, BC]

That governance system is important for me to look at.

I'm just going to go back to the issue of genetic discrimination. I think you made a very important point in terms of accessing medicare or health care services. In Canada, there wouldn't be any genetic discrimination because universality—one of the five principles of medicare—states that pre-existing conditions, etc., do not preclude you from getting the care you need when you need it. But there is a concern from some people that it does not govern private insurance. For instance, you had car insurance and you had one accident and your premiums doubled; you had a second accident and your premiums tripled; you had a third accident and you're not insurable anymore. Private insurance companies that, say, do life insurance and other types of insurance are already doing that: if you're a smoker your premiums go up. How do you prevent that from happening in a country like Canada where it isn't access to health care services, but looking at other areas of insurance?

[Dr. Pierre Meulien]

That's an excellent question. I don't have all of the answers, but I know that some of the top lawyers in this country are working on it, and some within our projects. Each of our projects—and this will be true for the 17 projects we're going to announce soon in the personalized health competition—has integrated into it sub-projects that are to do with the ethical, legal, and social issues related to some of this new information we're discovering.

Al mentioned a project on rare diseases that Canada is actually leading the world on in this field. When we sequence people's genomes, families' genomes, with these rare genetic disorders, we're very successful in finding the gene that's causing that particular anomaly. But we're also successful at finding a whole host of other so-called incidental findings. We then have to decide what we should do. Are they actionable? Are they not actionable? Are they important enough to share with the family? Are they not? What's the legal architecture around that? What should we do about it? Those types of questions are being researched by social scientists and humanists within each of our projects.

With regard to this question, I know the Privacy Commissioner of Canada is looking at the particular point that you're driving. I think they've either just published or are just about to publish on some of those concerns. They've been working with the insurance industry on that very topic. I think we will have answers; I don't think we have all of the answers now.

[Hedy Fry, Liberal, Vancouver Centre, BC]

Thank you. I want to ask one final question.

I want to thank both of you for bringing forward what I think are the most innovative presentations we have had to date. I think we're actually on the cusp of a revolution in medicine, and in understanding disease, etc.

However, once we move into this new mode of treatment using genetic information or genome information, who will pay for that? Currently, we don't have a pharmacare strategy in this country. A lot of people we know go to hospital and they get their medicine, but when they come out, if that medicine costs them $15,000 a year many of them cannot afford it. What would be the cost to the health care system of incorporating those absolutely necessary treatments via genomics?

[Dr. Pierre Meulien]

That's a great question. It's exactly the question that we asked the project teams who gave us proposals for the personalized health competition. They had to indicate what the economic rationale was for introducing the genomics-based—whatever in particular it was—in cancer or epilepsy or whatever. What is the economic value to the health system? If they did not have a business case, that proposal went in the bin. We were only going to entertain those that demonstrated economic sustainability value to the health system.

[Hedy Fry, Liberal, Vancouver Centre, BC]

Chair, I think I'm out of time.

What am I looking at here?

[The Chair, Conservative, Joy Smith]

You're done. Thank you so much.

Now we'll go on to Mr. Lobb.

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

Thank you, Chair.

My first question is for Mr. Edwards. I don't know if you mentioned it in your presentation—I might have missed it—but for how long have you been operating the consortium?

[Dr. Aled Edwards]

It's 10 years now. It's now the largest public-private partnership on the planet in this area of drug discovery.

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

Very good.

To give an idea to the committee, then, in those 10 years Mr. Meulien mentioned you've developed or discovered 25% of all that's been discovered in that—

[Dr. Aled Edwards]

In one area, yes.

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

With that amount of information that you've been able to discover, is there anything tangible you can—

[Dr. Aled Edwards]

Yes, there's one cool story, as an example.

There's a drug that's called Gleevec. Some cancers are caused when a chromosome breaks and they join together and half of one gene gets fused to half of another and creates like a monster chimera that doesn't know how to stop and it causes the cell to divide and divide. Novartis made a drug that treated CML, chronic myelogenous leukemia, a death sentence, by saying, that's a unique protein in the genome; it doesn't exist in all of us it only exists in the few people where the chromosome is messed up and broken. I wonder if I can make a drug that targets that? And indeed it works. That took six years from here's the molecule to first-in-man treatments in people.

We had another case where we were studying a new protein in another cancer where the same phenomenon happens. It happens in adolescence and they die in six months. We started with Glaxo's help the idea of what happens if we stop half of the protein we have, the ones we worked on? GSK said, guys, here's a patented from Mitsubishi, it's got a start, you should work on this. We collaborated with a guy in Harvard who has treated these patients and in 10 months published the paper with a chemical that cured the cancer in animals and....

Path one, which would have been the path normally followed, is patent that molecule, keep it secret, raise the money, and every step would be legal business, legal trying to grab a buck. We gave that compound away to 250 labs around the world. A guy in New York and a guy in Boston, whom we didn't know, took that compound and said, good gosh, it works not only for this cancer, but for two others. GlaxoSmithKline said, thank you very much. They didn't pay for it, this was all in the open but they said, we've got something internally that we can use that information for and they already did their first experiment in cancer patients. Three years.

So you can monetize time in this industry. Because three years ultimately in a billion-dollar drug is a lot of money and they put $10 million into the consortium and said, hey, guys, work on this. Then our sharing environment, our no-patent environment, made things happen real fast and it was three years as opposed to six.

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

That's interesting because regardless of the industry or the sector, you always hear of all the different silos that are built creating the lack of collaboration.

[Dr. Aled Edwards]

Absolutely.

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

It appears you've maybe come across here with something that's really going to change.