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.
3:20 p.m.
Bloc
Luc Thériault Bloc Montcalm, QC
Mr. Chair, can we start over? I will quickly repeat my question.
What weight does Canada carry on the global market?
Can we really believe that companies are bluffing when they say there will be fewer clinical trials?
3:20 p.m.
President, Innovative Medicines Canada
There are many elements to your question. We already lag behind our international peers in terms of the numbers of new products launched. This would be my first point. It's critical that the PMPRB does not further erode Canada's status in that global market.
At the moment, Canadians only have access to 48% of all new medicines launched globally. That compares with 64% in Germany and 60% in the U.K. We've talked about that before and there is, of course, more in the U.S. Only 25% of all medicines are available in Canada within the first year of international launch compared with a higher percentage in Germany, the U.K. and the U.S.
There is also a time lag that has been referred to. I'll include that in my comments because you're asking about the international status of Canada. Canadians wait an average of 17 months from the first international launch, whereas medicines are available far sooner in other countries—for example, 11 months in Germany, 12 months in the U.K. and four months in the U.S., so we're already at a disadvantage.
You asked specifically about clinical trials, but if there's time, I'll add a bit more. The industry, first of all, is extremely important to Canada in its support of clinical trials. Between 65% and 75% of clinical trials initiated in Canada in every quarter since 2015 have sponsored by industry.
According to the data we have been collecting, there's been a decrease of about 20%, compared with the previous three years, in clinical trials being launched in this country. Some of that might be due to COVID. I know that someone raised that point, but we're looking at data across quite a period of time.
I have other data points on impact, but I will stop there in deference to your question.
3:25 p.m.
Bloc
Luc Thériault Bloc Montcalm, QC
You alluded in your presentation to an ineffective consultation process. You aren't the only one pointing that out. We've heard that grievance from a number of stakeholders. You said that the die had already been cast and that the reform had been determined in advance.
What makes you think that everything was predetermined?
I know there were two delays. I understood that you didn't want a third delay, roundtable or no roundtable, because a six-month delay would only draw out the uncertainty for six months. That would not help matters.
So what do you feel needs to be done with respect to the process?
3:25 p.m.
President, Innovative Medicines Canada
I want to recall something that I heard from the Secretary of the Treasury Board, Peter Wallace, early in his tenure when he was appointed to address that question. He talked about how important it is for government not just to listen and walk through a consultation process, but also to hear. That is the piece that we all fear has been missing in this process. We cannot state that the number of steps haven't been taken—they have—but we have not been heard.
Early in the process, I did submit a letter, which I can make available to this committee. The letter outlined our numerous concerns with the process and why we felt we were not being heard. Perhaps the most compelling data point is that 80% of 112 submissions to PMPRB's most recent consultation are opposed to or have expressed concerns about the guidelines, yet minimal changes have been made over the course of the four-year process.
Thank you.
3:25 p.m.
Liberal
The Chair Liberal Ron McKinnon
Thank you, Mr. Thériault.
We'll go now to Mr. Davies for six minutes.
3:25 p.m.
NDP
Don Davies NDP Vancouver Kingsway, BC
Thank you.
Ms. Little, first of all, thank you for sharing your very personal experience, and best wishes to your daughter.
You made reference to the fact that the molecules involved in the medicine that helps your daughter were discovered in the 1950s, and if I understand correctly, all that changes is that a pharmaceutical company takes the same molecule, changes the delivery system and charges, if I may say, an outrageously expanded amount of money for it.
Can you explain that in detail to us?
3:25 p.m.
President, Liv-A-Little Foundation
Yes.
The active ingredient, cysteamine, is in all four of the products that I previously talked about. With cysteamine, the hardest part of almost any treatment, if you ask any patient, is the side effects. The side effects of cysteamine are from all drugs. When they took Cystagon and turned it into Procysbi.... Cystagon has to be given every four hours and Procysbi has to be given every two hours.
I wholeheartedly support this drug being here in Canada and Canadians having access to it. If Olivia were a 26-year-old woman managing a relationship and career, of course I would want her to have a drug that makes compliance easier. The problem is that all of the side effects are still the same: gastro upset, making patients smell, loss of or poor appetite, gas, bloating...just horrendous things that nobody wants to deal with.
The difference between Cystagon and the Procysbi was that they enteric-coated the latter, so it releases differently. Is it worth that? That's not for me to decide, but a drug—an active ingredient—that's been around for decades and was first introduced as a treatment in 1994 for patients...I find it unjustifiable and with the—
3:25 p.m.
NDP
3:25 p.m.
President, Liv-A-Little Foundation
The drug is based on weight, I just have to point out. There is the two-year-old who takes Procysbi for $56,000 a year versus Olivia who takes Cystagon at $18,000 a year. If Olivia were on Procysbi, she would have to take a higher dose, which would result in more money.
The compounded eye drops that have been safe, effective and on the market for years are $3,000 a year. The new drops are $120,000 a year. Again, they do offer easier compliance, but the drug is the same.
3:30 p.m.
NDP
Don Davies NDP Vancouver Kingsway, BC
I understand that you had some concerns about clinical trials. Can you explain to us your views on clinical trials and their importance?
3:30 p.m.
President, Liv-A-Little Foundation
Yes, and I'm going to speak only to our rare disease because it is the only disease I represent.
We are very fortunate that a cure for cystinosis is on the horizon. In 2019, a clinical trial opened that uses gene and stem cell therapy, which, again, will hopefully result in a cure. The clinical trial is in the States. Right now, the pharmaceutical company AvroBio is taking the time to take the clinical trials global. I know they're in Europe and they're moving to other locations in the States. They are not coming to Canada.
I will say, however, that the first patient to go through the clinical trial in the fall of 2019 was a Canadian male. We are still being offered clinical trials. I think this is where we need to hear more from patients. We need to hear the stories behind the words and the numbers.
3:30 p.m.
NDP
Don Davies NDP Vancouver Kingsway, BC
Thank you.
Dr. McCabe, approximately what percentage of the money going into research to discover new drugs is publicly funded?
3:30 p.m.
Chief Executive Officer and Executive Director, Institute of Health Economics
That's an incredibly difficult question to answer, because—
3:30 p.m.
Chief Executive Officer and Executive Director, Institute of Health Economics
I'll thank him for that the next time we're having a beer, hopefully.
I don't have that figure at hand, but, undoubtedly, the basic and increasingly early translational work for pharmaceuticals and advanced medicinal therapies draws heavily on public dollars. I think the COVID vaccines are a fantastic example of how a great deal of investment from the public sector was then picked up to take through phase three trials, which the pharmaceutical industry are absolutely astoundingly good at, but it takes both. The proportions vary a lot.
I'm sorry. That's not a helpful answer.
3:30 p.m.
NDP
Don Davies NDP Vancouver Kingsway, BC
No, that's good.
I'm going to spend a bit of time on the last one, because I think Trikafta is a very interesting example of this. I think every single Parliamentarian wants every single Canadian who needs Trikafta to get access to it, and that's not happening today.
Here's a brief history of it. We know that it was a research team at the Hospital for Sick Children at the University of Toronto that discovered a CF gene in the 1980s. It was the Canadian Cystic Fibrosis Foundation and clinics that identified almost all of the research subjects from families in Canada. They donated blood samples. The Canadian Cystic Fibrosis Foundation and the Canadian Institutes of Health Research supported the research. CFF gave $150 million to Vertex in 2000 to do the research.
When the company finally launched the precursor to that, Kalydeco, they priced it at $294,000 annually for two pills a day. Twenty-nine researchers contacted them; they wrote Vertex's CEO to express their dismay and disappointment that this successful drug was diminished by this “unconscionable price”, in their words.
Aidan Hollis, whom you reference, studied Vertex's pricing for Kalydeco and Orkami—a precursor as well to Trikafta—estimates that the company's profits from the two drugs will be $21.1 billion. He concludes that the high prices are not justified by costs or the need to support the innovation. The price seems more designed to reward shareholders.
My question is, what can we do to get Trikafta into the hands of Canadians? Is it time that the Canadian government used compulsory licensing? If this company won't apply to Health Canada to make this drug available, should we exercise our right to compulsory license that drug? Finally, how many times has the Canadian government used compulsory licensing?
3:30 p.m.
Chief Executive Officer and Executive Director, Institute of Health Economics
I don't know how many times the Canadian government has used compulsory licensing.
I think the magnitude of benefit of Trikafta to the Canadian CF population is so large that it would be legitimate for the government to consider using its compulsory licensing power if Vertex persists with not bringing it to Canada.
Again, I would hope that would not happen, because it would be a failure of the system.
3:35 p.m.
Liberal
The Chair Liberal Ron McKinnon
Thank you, Mr. Davies.
That wraps up round one. We will start round two. I believe it's with Mr. d'Entremont.
Mr. d'Entremont, please go ahead for five minutes.
3:35 p.m.
Conservative
Chris d'Entremont Conservative West Nova, NS
Thanks a lot, Mr. Chair.
We get to the basis here: expensive drugs and access to certain drugs.
Maybe to Ms. Fralick, how do we make sure that drugs are available and bring down the prices?
Those are the two things that need to happen here. Drug pricing needs to go down, and Canadians need to have access to those drugs. Where's that middle in terms of where PMPRB is and where pharmaceutical companies are?
3:35 p.m.
President, Innovative Medicines Canada
We, as an industry, have pulled together on at least two occasions. I guess what we found was a good way forward and have presented this to government. I know that one of the honourable members of this committee did cite one piece of one of those offers, but it was an isolated piece that was really part of a comprehensive package that we felt would help government meet its policy needs. Again, it's still to ensure that Canadians get access to the drugs they need.
The government has not expressed an interest in that, which is why I continue to come back to my plea, if you will, and my most compelling point. There needs to be a dialogue, not just with industry and governments. I fully support having patients part of this. It has been part of our mantra over the last couple of years.
3:35 p.m.
Conservative
Chris d'Entremont Conservative West Nova, NS
Within it, then, we should have some kind of table or place where the PMPRB can be a listener or chair the meeting—whatever it is we want them to do—and bring these different folks to that table.