Evidence of meeting #41 for Health in the 43rd Parliament, 2nd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was drugs.
A recording is available from Parliament.
Conservative
Chris d'Entremont Conservative West Nova, NS
Who should be at the table? You're saying that patient groups and pharmaceutical companies should. Who else should be there?
President, Innovative Medicines Canada
The whole-of-government needs to be there. I did reference that in my opening comments.
At the moment, the PMPRB is within the Health umbrella, and everything we do has been put over to Health. Whenever we write to another department, it is sent over to Health, so we're stuck with a struggle between dealing with the cost containment debate with Health Canada, and on the other side with ISED—Innovation, Science and Economic Development Canada. We have a wonderful report that was done in 2018 by HBEST, the health and biosciences economic strategy table. We have a more recent one done a few months ago by the Industry Strategy Council. All of these promote the life sciences as an economic driver for the health and well-being of Canadians.
We're struggling as an industry. We're working very positively with Minister Champagne and have over the years with others, like Minister Bains, to try to encourage investment to come to Canada, but the cost containment policies really make it difficult for our CEOs to compete at the global level.
Conservative
Chris d'Entremont Conservative West Nova, NS
People at the table should include provinces as well. I was a provincial minister. A lot of times we had an opportunity to help set prices or purchase different kinds of drugs. Avastin was one decision that happened during my time. It was a few million dollars, and we had to make a decision on where we were going on it.
We funded it, by the way.
How do the provinces play into this? I ask because they are not necessarily a part of the PMPRB. They are a part of the other program.
President, Innovative Medicines Canada
They do pay for the drugs, many of them, so they have a vested interest. We've had wonderful conversations with many of the provinces. Anie Perrault, earlier in this session, talked about the life sciences strategy in Quebec. We have had very good conversations in Ontario and with Nova Scotia, Alberta and British Columbia—you can go right across the country.
I think there's a way to do that. There has to be a will. I think that's the main issue. As Paul Lévesque said, with the pandemic, it's the wrong reform for the wrong time. Everyone is consumed with the pandemic, so let's start with a coalition of—hopefully—the willing and then figure out from there if we are missing anyone at the table.
Conservative
Chris d'Entremont Conservative West Nova, NS
Is there a part of these regulations that you would say you could phase in? We could continue to discuss a few of the finer points, but could a number of those recommendations actually be brought in immediately?
President, Innovative Medicines Canada
I think this would be a beautiful start to a conversation. The concern is about the extreme nature of the impact of the regulations as they currently sit. The statistic that was just quoted a moment ago—the 90% and 99%—comes from a PMPRB assessment. It's not an industry assessment. We don't have a line of sight on all of those data that the PMPRB has been working with, so let's get to the table and discuss the art of the possible, as opposed to being so estranged and the relationship being.... I've used words like not “ideal” and “fractured”. You've seen that in the press when I've used them. We can do better.
Liberal
The Chair Liberal Ron McKinnon
Yes, you are out of time. Thank you very much. You can be co-chair, perhaps.
We go now to Ms. O'Connell.
Ms. O'Connell, please go ahead for five minutes.
Liberal
Jennifer O'Connell Liberal Pickering—Uxbridge, ON
Thank you, Chair.
Thank you to all the witnesses for appearing.
Ms. Little, thank you for your testimony and for sharing your daughter's story. You spoke toward the end of your opening statement about—forgive me for paraphrasing, but it stuck with me—how at first you thought about your daughter accessing these drugs to save her life and, as she gets older, how you worry about whether she can afford to sustain these life-saving medicines. That's the piece that I think a lot about when we're having this conversation.
It's this issue of whether drugs will come here, but I often wonder, even if the drugs come here with outrageous prices, how does that make them any more accessible for the average Canadian, unless they're independently wealthy? I see so many GoFundMe pages fundraising for individuals to get some of these drugs. Could you just speak a little more about that experience and the availability to access them even if drugs do come here?
President, Liv-A-Little Foundation
This is something we always think about as a family. One, we're very fortunate that my husband does have a great benefits package. When Cystadrops came onto the market, the insurance company lay in the weeds to see if the government was going to cover it before the company made the decision. The insurance company just sat and waited, and thankfully, we didn't have to go without the drug in that time period.
In Ontario, though each province as we know is different.... From what I know, every family in Canada has received coverage for cystinosis. We're very lucky. We're an ideal population. There are roughly only 100 of us and not 5,000. It would be a different story, and we'd have a different battle if....
The family I mentioned in my testimony does have Procysbi and the eye drops covered. They have insurance. Their insurance package isn't as nice as our family's. Some of the drugs that treat our children are not covered, because they are supplements, but if they do not get these supplements, they will go into renal failure. One family still pays out $230 a month for these supplements.
The excessively priced drug is one thing. How do I raise my child? Do I have to raise my child for her to take a job in a company, so she can get a good benefits package versus doing something she's passionate about? As Canadians, I don't think we should have to think about that as a family. She should have every equal opportunity and access to treatments. She was born this way. This wasn't lifestyle; this wasn't an accident. This is how she was born.
This is why we need to be concerned. Just because Canada covers these drugs now, doesn't mean it is going to 20, 30 or 40 years from now.
Liberal
Jennifer O'Connell Liberal Pickering—Uxbridge, ON
It leads to the fight that even if these drugs get approved.... We look at Trikafta, and CF is a good example. Even when the drugs come through that approval process at Health Canada, the next fight is, are the provinces and territories going to cover them, or is private insurance going to cover the costs?
It just feels that when drugs are approved for use here, the fight begins over who's going to pay for them, because they're so expensive in many cases.
Liberal
Jennifer O'Connell Liberal Pickering—Uxbridge, ON
Thank you for that perspective.
Dr. McCabe, I want to ask you if you have a position on something that was mentioned in an earlier panel. An earlier witness talked about the threat that pharmaceutical companies will leave Canada if this happens, because we're a small jurisdiction, but she said that Canada's not a trivial market. Although we're not as big as the U.S., we're certainly not trivial.
Do you have thoughts on that?
Chief Executive Officer and Executive Director, Institute of Health Economics
Yes, we're not a trivial market, and certainly not when we work in a pan-Canadian way.
No disrespect to Prince Edward Island, but in global terms, its population means that some people might describe it as unimportant. We are tens of millions of people, and when we work together, we are a substantial market that will generate a lot of revenue and profit for companies. Given that they're profit maximisers, I wouldn't expect them to leave.
There are many things we can do, and should look to do, such as complementary policies to make us a better place for companies that are indeed focused to be here—and that has to do with research infrastructure that we don't currently have.
The reason the U.K. does so well and can get away with its low prices is not just that it has domestic global companies, but has the most amazing research infrastructure. As it showed with COVID, it can run 30,000 or 40,000 high-quality patient trials at almost the drop of a hat. We couldn't do that here.
In terms of keeping the companies here, I don't think it's about prices—and that's what the literature says. Companies locate on the basis of other things.
Liberal
The Chair Liberal Ron McKinnon
Thank you, Ms. O'Connell.
We go back to the Conservatives at this point and Mr. d'Entremont
Conservative
Chris d'Entremont Conservative West Nova, NS
The provinces of Quebec, Ontario and Alberta have again been calling to hold off the changes to PMPRB. Where do we think that's going?
I know a lot of these questions are for IMC, but it represents the industry. Where are the provinces, and how is that going?
President, Innovative Medicines Canada
Just to clarify this, when I mentioned Alberta, it was not in terms of supporting a delay in the PMPRB. They may or may not. They haven't voiced that to us, but they have certainly voiced an interest in being competitive in the life sciences world. That's the piece that I've noticed. Ontario and Quebec have been very, very active for decades. That's where most of the industry is located. In the Atlantic provinces, the conversations I've been having with them, and again, right across the country, reflect that they truly want to be competitive.
I would just add that Canada certainly isn't trivial, but it is only 2% of the global market. It's very difficult for us to compete on that stage and bring industry and various other pieces of the life sciences sector here. We need to be on our A-game.
Conservative
Chris d'Entremont Conservative West Nova, NS
A lot of the patient groups have said that some of this research will go offshore or go to another country. It could take a number of years before we see some of these innovative medicines show up for Canadian patients. How real is that threat? Is it a real threat, or is it truly just because of this global market that we seem to find ourselves in?
President, Innovative Medicines Canada
I prefer not to use the word “threat”, because none of the companies, none of our members, have ever viewed this as a threat. Rather, it's a reflection of the reality of the situation.
I can comment quantitatively. I have an advantage that you don't and that no one on this committee does. You're looking at lagging indicators in the reports that come out with data that's a couple of years old. I get to talk with these companies on a daily basis. While I can't name companies—I can name one, but I'll save that for my third comment—I can tell you that at least six planned drug launches by our member companies have been delayed, including drugs for rare diseases, because of the uncertainty around PMPRB. We know that only 15 of 54 drugs that have been approved by the U.S. FDA have even been submitted to Health Canada for approval. I have a list of 39 drugs, and not just on rare diseases—they include cancer, Parkinson's and HIV—that have not been submitted to Health Canada for approval specifically because of the uncertainty around PMPRB. This is not for other reasons.
That's quantitatively; I gave you a few numbers there.
Qualitatively, Life Sciences Ontario did a survey of companies and executives just a couple of months ago: 35% say they've already delayed bringing new treatments to Canada; 96% anticipate that these new rules will drive decisions to delay or not bring new treatments to Canada; and 90% say that the reform will reduce research, clinical trials and innovation.
My last point, if you want a very specific example, is the letter that was submitted to this committee by a member company, Medicago. It states very clearly that as a Canadian company—we've all heard about Medicago, and are so proud to have a homegrown company—when it comes to the launch, it may not be here in Canada. It's because of PMPRB.
Conservative
Chris d'Entremont Conservative West Nova, NS
Is it because of the rules that are being proposed for PMPRB or is it the continued delay of those regulations?
President, Innovative Medicines Canada
For clarification, it is the PMPRB regulations, the new regime that is scheduled to come into effect on July 1, in just three weeks' time. That is what is causing the problem.
On the PMPRB itself, we are very happy to work with government to modernize it. Interestingly, by the way, while many pieces of PMPRB were overhauled—it wasn't just modernized, it was overhauled—the actual definition the PMPRB uses for R and D investment was not touched. It took Statistics Canada and its report back in May to provide much more current data than what PMPRB uses from its 1987 definition.
Conservative
Chris d'Entremont Conservative West Nova, NS
Turning now to Ms. Little, I'm the father of a diabetic, so I have some of the same problems. Right now he's on my plan, but as he ages out, he needs to find employment. He needs to be able to work through his disease and be able to get some kind of coverage.
Maybe you could explain your daughter's disease a little bit more as well.
President, Liv-A-Little Foundation
With Olivia it's genetic. She also lives with chronic kidney disease, and....
Go ahead, Mr. Chair.