Health Committee on June 4th, 2021

[Dr. Steven Morgan]

If you want an innovation strategy on R and D in the pharmaceutical sector, you have to improve the productivity of the R and D itself. Manufacturers locate their research and development investments based on science. If you want good scientific research conducted in Canada, invest in Canadian science, invest in data platforms, invest in clinical trial networks, those kinds of things.

Paying higher prices isn't necessary to attract R and D, and countries like the United Kingdom prove that. You can actually have effectively managed drug budgets and significant pharmaceutical investment. Focus on science. Put the investments into the scientific enterprise in Canada. That's where you're going to get your best return on innovation policy.

[Tony Van Bynen, Liberal, Newmarket—Aurora, ON]

Thank you.

That's a great segue to my next question, which I'd like to direct to either Ms. Perrault or Mr. Lévesque from BIOQuébec.

I know that supporting Canada's biotechnology and life sciences industry is a priority for this government that goes beyond responding to COVID-19. Budget 2021 proposes to invest $2.2 billion towards growing and strengthening our domestic life sciences sector, including $92 million for adMare BioInnovations, which is based in Montreal, to support company creation, scale-up and training activities in the life sciences sector.

What impact do you think these investments will have on Canada and Quebec's life sciences and biotechnology industries?

[Anie Perrault]

I can answer that.

Do you want to go ahead, Paul, on this one?

[Paul Lévesque]

No, go ahead. I'll complement you.

[The Chair, Liberal, Ron McKinnon]

Let's make it a quick response. We're way, way over the time.

[Anie Perrault]

Okay.

Actually, Mr. Van Bynen, I applaud the investment that the Canadian government has made recently in the sector. My point today is that the ecosystem is much larger than just drug prices. It's about much more than that. We don't have a Canadian life sciences strategy right now. It does not exist. I think we should have one. We should take the opportunity that the pandemic is giving us, and the rebound that the economy should take, to actually think about putting in place a Canadian life sciences strategy that will take into consideration drug prices but also much more than just that.

[Tony Van Bynen, Liberal, Newmarket—Aurora, ON]

Thank you, Mr. Chair.

[The Chair, Liberal, Ron McKinnon]

Thank you, Mr. Van Bynen.

Mr. Kmiec, please go ahead for five minutes.

[Tom Kmiec, Conservative, Calgary Shepard, AB]

Thank you, Mr. Chair.

Mr. Lévesque, I'm reading here an email from PMPRB executives from December 5 after a meeting they had with industry groups. In it, one of them says that “industry has been sucking Canada for decades”. From all the discussions I've had here, you don't seem to do that. You provide jobs. You're in R and D. You do work.

What do you think of that coming from an executive at the PMPRB responsible for stakeholder relations?

[Paul Lévesque]

The life science sector is important. If we haven't actually drawn that learning from the pandemic, I don't know what is important to take from it.

I don't represent a multinational. I'm a homegrown pharmaceutical company. We don't have a lot of those. As Dr. Grover was just saying, in the U.K. they get some benefits from the industry despite having low prices. They have a homegrown company. AstraZeneca is from there. It's a multinational that is homegrown in the U.K. What is the equivalent in Canada? There is none. That's the point: We're one of them.

Mr. Van Bynen had a very good example a moment ago in his question when he said, well, we are providing a lot of money in that sector. That is true. We're being helped in terms of income tax credits and in all kinds of areas, but we cannot sell. We are having a hard time getting reimbursed by the government. It's like supporting an industry manufacturing two-by-fours when you don't want the two-by-fours to be sold in your territory. That's the way I feel as a Quebec homegrown pharmaceutical company.

Yes, you need to continue to nurture and put money where it can have an impact, but quite frankly, I don't need that much money. I would like to have access to the Canadian market, just as I have access to the U.S. market and access to the EU market. What I'm telling you is that I'm very proud of being here. The model we have here in Quebec is that a lot of the research comes from the local university. We've made deals with them. We catalyze, in a way, their Canadian—

[Tom Kmiec, Conservative, Calgary Shepard, AB]

Thank you, Mr. Lévesque. I'm sorry to interrupt you. I want to ask one more question of Cystic Fibrosis Canada.

[Paul Lévesque]

Okay.

[Tom Kmiec, Conservative, Calgary Shepard, AB]

Kelly, I have the May 27 letter you sent. The PMPRB refused to show up today to testify. We can all make assumptions on why they refused to show up. In your letter, you call for a stop to the changes the PMPRB is trying to introduce through the guidelines, and also for conducting “a full investigation of the agency and its work”. You sent this to the Prime Minister.

Have you heard back from the Prime Minister or anyone in the government? What type of investigation did you have in mind?

[Kelly Grover]

We have not heard back from anyone.

Just thinking and listening to everyone, I sort of want to stress something. We were called out as a patient organization for spreading disinformation and being an opponent, yet we agreed with some of the changes made by the PMPRB, so I find this very curious and wanted to make that clear.

We also were asked to be part of a consultation, and we took our time. We are very busy. We are trying to get a drug funded in Canada, which is no small feat for a rare disease, so I wanted to make that clear.

In terms of the investigation, it is outlined in the CF treatment society letter. We would be looking for the guidelines to be stayed while we look at the conduct of the PMPRB, how they are consulting with patient groups, and then how they maligned us in this, or intended to. They maligned us in the document. Whether the document was put into action, I couldn't say.

As I said earlier, the board chair doubled down on this, and so did Mr. Clark, who was asked about it in a media report. There is nothing wrong with combatting...or doing a communications plan. Calling people liars and spreading fake news about those who are trying to do the best they can as a charity and for the community, I find really concerning. I think you should be concerned. I think the Prime Minister should be concerned, and I think the health minister should be concerned.

[Tom Kmiec, Conservative, Calgary Shepard, AB]

Thank you for that. I have one last question.

Obviously, you're talking to other patient advocacy groups in the lead-up to the implementation of these regulations on July 1. Should that come about? Should the government not delay it further or maybe stay them, like you asked them to do, to conduct an investigation of the PMPRB?

What will you do in the six months afterward to advocate on behalf of the families who are affected by cystic fibrosis? Do you trust the PMPRB to conduct the implementation?

[Kelly Grover]

I am going to answer the last question and come back.

We don't trust the PMPRB for the implementation. They are doing consultations on the evaluation right now. None of us knew about it, because it was promoted on Twitter, and we're not on Twitter all the time, so that was a bit of a problem.

As for what are we doing to do, honestly, we only have so much time and so much energy, and so does this community. We need to get Trikafta into the hands of people who live with this disease. That is not going to be through the PMPRB now, so we have to turn our attention over to our provincial partners and hopefully see this drug funded. We are concerned about the future of cystic fibrosis drugs at this time, but, as I said, we're going to keep our eye on it.

Also, Dr. Morgan spoke about the rare disease framework. Obviously, we are interested in that as well.

There's only so much time and energy. The priority is getting this drug here now.

[The Chair, Liberal, Ron McKinnon]

Thank you, Mr. Kmiec.

We go now to Dr. Powlowski for five minutes.

[Marcus Powlowski, Liberal, Thunder Bay—Rainy River, ON]

First, let me start by saying that nobody should ever question the integrity of parents of sick children in doing what they're doing. Certainly, I don't think anybody is lying. I think, however, there might be some disagreement as to how to best help Canadians, including Canadians with cystic fibrosis. In passing, I would note that one of my kids' best friends has cystic fibrosis and certainly would like access to Trikafta.

I have a question for Ms. Grover. Hopefully she can be fairly brief. Vertex was refusing for a long time to ask Health Canada for approval for Trikafta. I know Cystic Fibrosis Canada has been advocating and lobbying for these changes to the PMPRB to be withdrawn. Has Vertex at any time asked Cystic Fibrosis Canada to lobby the government on this issue?

[Kelly Grover]

No.

[Marcus Powlowski, Liberal, Thunder Bay—Rainy River, ON]

Have they told Cystic Fibrosis Canada that the reason they weren't asking for approval from Health Canada was a result of the proposed changes to PMPRB, and that unless those changes were withdrawn, they wouldn't submit the drug for approval?

[Kelly Grover]

They didn't tell us that, but it was said publicly.

[Marcus Powlowski, Liberal, Thunder Bay—Rainy River, ON]

I would like to now address my questions to Professor Morgan. If there is time, I will also give Ms. Grover an opportunity to respond.

Professor Morgan, in your opinion, do you think drug companies are using patient advocacy groups basically to do the lobbying for them in order to further their own business interests, and by refusing to put an application before Health Canada for their drug Trikafta, are they not holding sick Canadians with cystic fibrosis hostage to their demands?

What are pharmaceutical companies really afraid of? It might be because these changes.... I've heard they're really afraid that these changes to the PMPRB would basically allow other jurisdictions to figure out the actual price our country was paying for drugs, and what purchasers were paying in our country.

This is a jealously guarded secret. As you've said previously, they don't want countries to know what other countries and other jurisdictions, other buyers, are paying for their drugs. With these changes to the PMPRB, it would allow HTA and pharmacoeconomics in the PMPRB to set a maximum price based on HTA and a maximum QALY saved.

When PMPRB was looking at the actual price that it would allow for a drug, this would allow other countries to figure out the price that Canada and purchasers in Canada were paying for the drug.

[Dr. Steven Morgan]

You've bundled a couple of questions. I appreciate that, because I literally have to run after responding to this.

PMPRB's net-after-rebate price restrictions on economic analyses would not necessarily disclose the final prices in Canada, because it sets a maximum price that the manufacturer could ask payers in Canada to pay. Payers might well negotiate even lower prices. The fact that these medicines have very high sticker prices, which are covered in other countries, is certainly a reflection that those countries are getting rebates.

My own research shows those rebates are often more than 50% off. For very expensive drugs, they can be in the order of 80% to 90% off the list price. Internationally, everyone knows this is happening, but we don't know the exact numbers. The regulations are not going to disclose corporate secrets globally.

In terms of investments in patient organizations, Ted Marmor, a famous political scientist who studied health policy in the United States, used to use the line that nothing that is regular is stupid. Manufacturers make investments in patient organizations when they need to pursue particular aspects of their overall public relations strategy. Some of that is good will, and some of that is providing resources to voices that can help them build their cases. If those voices turned against the manufacturer, and were as vocally critical of the manufacturer as they are of drug plans that might not want to pay the price that is being asked, you'd find that the resources and the funding for the charities would dry up.

I'm very sorry to the committee, and to you, Mr. Chair, but I must go.

Thank you, and good luck with the rest of the hearing.

[Marcus Powlowski, Liberal, Thunder Bay—Rainy River, ON]

Do I have time?

[The Chair, Liberal, Ron McKinnon]

Mr. Powlowski, your time is up.

Thank you, Doctor Morgan. I appreciate your time with us.

Mr. Thériault, you have the floor for two and a half minutes.