Health Committee on May 24th, 2024

[The Chair, Liberal, Sean Casey]

I call this meeting to order.

Welcome to meeting number 117 of the House of Commons Standing Committee on Health.

Before we begin, I would like to ask all members and other in-person participants to consult the cards on the table for guidelines to prevent audio feedback incidents.

Please take note of the following preventative measures in place to protect the health and safety of all participants, including the interpreters. Please use only the black, approved earpiece. The former gray earpieces may no longer be used. Keep the earpiece away from all microphones at all times, and when you are not using your earpiece, place it face down on the sticker placed on the table for this purpose. Thank you for your co-operation.

In accordance with our routine motion, I'm informing the committee that all remote participants have completed the required connection tests in advance of the meeting. As a result of those connection tests, one connection was unsatisfactory to participate in the meeting, so we have a smaller witness panel than is contained in the notice of motion. Jessica Diniz from JDRF will not be with us on this panel. I have taken the executive decision of adding her to one of the later panels today, provided that we can come up with the right technology so that she can fully participate.

Pursuant to the order of reference adopted by the House of Commons on May 22, 2024, the committee is commencing its study of Bill C-64, an act respecting pharmacare.

As indicated in the memo that was sent out a couple of days ago, I would like to remind members that amendments to Bill C-64 must be submitted to the clerk of the committee by four o'clock today. It's important for members to note that, pursuant to the order adopted by the House on May 22, 2024, the 4 p.m. deadline to submit amendments is firm. This means that any amendments submitted to the clerk after the deadline and any amendments moved from the floor during clause-by-clause consideration of the bill will not be considered by the committee.

Without further ado, I would like to welcome our panel of witnesses and thank them for their patience as we attempted to overcome our technical difficulties.

We have with us today from the Canadian Association for Pharmacy Distribution Management, Angelique Berg, president and chief executive officer, appearing by video conference. In the room with us representing the Canadian Federation of Nurses Unions, we have Linda Silas, president. Also online for the Canadian Organization for Rare Disorders, we have Durhane Wong-Rieger, president and CEO.

Welcome to all of those who have joined us to help us out with Bill C-64. We are going to start with opening statements in the order that appears on the notice of meeting, so we are going to start with the Canadian Association for Pharmacy Distribution Management.

Ms. Berg, welcome to the committee. You have the floor.

[Angelique Berg, President and Chief Executive Officer, Canadian Association for Pharmacy Distribution Management]

Thank you, Mr. Chair and members of the committee. Thank you for your attention today.

I'm Angelique Berg, president and CEO at CAPDM, the Canadian Association for Pharmacy Distribution Management.

CAPDM is the nation's trade association for wholesale distributors that channel over 90% of the medicines our country consumes. With their trading partners, distributors form our efficient, accurate and reliable supply chain that ensures physical access to medicines, so naturally we support the aim of Bill C-64. We support both affordability and access in balance and not at the expense of one or the other.

Importantly, we recognize the enormous challenges that government and our citizenry face: slowed economic growth, regulatory overburden, health care system insufficiency and a growing percentage of the population over 65. I mention these to tell you that we're aware of the broader context, and we stand with you in navigating solutions where we can be of value.

To appreciate our comments relative to Bill C-64, I'll provide some basics about the supply chain because we rarely think about how our medicines get to us, just so long as they do.

The supply chain begins with manufacturers, who sell to distributors, who then sell to pharmacies and hospitals. Purchases flow the opposite way: from pharmacies, who buy from distributors, who buy from manufacturers. Rounding out that supply chain are service providers to this core supply chain, like third party logistics firms and transportation companies. The majority of Canada's pharmacy supply chain stakeholders are CAPDM members.

Distributors streamline orders and deliveries for 15,000 product SKUs between hundreds of manufacturers and over 12,000 points of dispensing over nine million square kilometres, creating efficiencies that save the country over $1 billion annually. Their safety stock also provides a short-term shortages buffer against drug shortages. The sector has over 30 distribution centres, all of which comply with at least three overarching acts, up to seven different Health Canada licences and very high technology to meet the conditions of all of those. The sector has roughly 20,000 employees—experts in inventory turnover and the secure and complex handling of all medications—and they are the backbone of our pharmacy supply chain.

Our market is challenging. It's a controlled market where funding is limited, yet operating and regulatory costs are not. Distribution is largely funded as a factor of the listed drug prices: The lower the price, the less funding is available to get medications to Canadians.

Costs have increased at least 2.5 times faster than volumes in the last five to 10 years, with market forces and increasing regulation. The gap is estimated at over $100 million annually, and distributors have so far absorbed that through eliminating expenses to stay in business and with only minimal impact to Canadians.

Assuming that it is striving for lower drug prices, we see that Bill C-64 has the potential to erode physical access and to exacerbate drug shortages. Because they run so efficiently, reduced funding means that distributors have few options left but to reduce services. Some examples are that they could stop carrying money-losing products, which would be those of the lowest cost; reduce safety stock, which eliminates the buffer against shortages; or reduce delivery frequency to high-cost regions or eliminate them altogether.

CAPDM members are understandably concerned about some of Bill C-64, generally about reduced drug pricing and specifically about a restrictive national formulary, which was addressed in last evening's panel, and bulk purchasing. Evidence suggests that these types of policies limit suppliers. When the government awards a contract to a single manufacturer, that firm effectively becomes a monopoly, so competitors have little incentive to stay in the market. Concentrated marked power increases the risk of limited supply, and therein lies our concern.

We recommend that this policy change be approached with caution, that further regulatory burden be avoided and that time be taken for consultation with all supply chain actors to uncover potentially unintended consequences so that Bill C-64's aims can be successful.

We don't have all the answers—we dearly wish that we did—but we're most willing to collaborate with government to find them in order to ensure safe, secure and timely physical access to medicines for all Canadians, and that's why we exist.

Thank you on behalf of the CAPDM board of directors, and I welcome your questions.

[The Chair, Liberal, Sean Casey]

Thank you, Ms. Berg.

Next, on behalf of the Canadian Federation of Nurses Unions, we have Linda Silas.

Ms. Silas, welcome to the committee. You have the floor.

[Linda Silas, President, Canadian Federation of Nurses Unions]

Thank you, Chair.

As mentioned, my name is Linda Silas and I'm the president of the Canadian Federation of Nurses Unions. As a nurse, I don't have to do what Angelique did and explain what we do. CFNU is the largest nursing organization in Canada. We represent over 250,000 unionized nurses and nursing students working everywhere, including in home care, long-term care, community care and acute care.

I'm so honoured to finally speak to you today on a bill that has been considered a leading priority for nurses for many years. It is a step towards a universal pharmacare program. CFNU has commissioned numerous studies and polls over the years to help build the case for the overwhelming merits of a public, single-payer pharmacare program in the country. You will be hearing from Dr. Marc-André Gagnon later on today, who was the author of one of our first reports.

There are many reasons why nurses support a public, single-payer pharmacare program: the positive health outcomes it would bring to our patients, the equitable access it would provide everyone in Canada, and the capacity it would free up in our health care system through avoidable hospital room visits and costs related to non-adherence to prescription drugs.

The latter point is the critical point I want to talk about today: the health human resources crisis. Each quarter, we witness the number of nursing vacancies rise to record heights across the country. Sadly, nurses are still working in our crippling system. We see patients unable to access their medications. They really should be at home, but they need to stay in our waiting rooms and hospital beds just to take their medications.

Members of Parliament, you have the power to change this today. We are thrilled to see Bill C-64 move ahead in the direction Canada's nurses have long advocated for. It is in sync with the recommendation of every major government study and commission on the matter, including the advisory council on the implementation of national pharmacare of 2019.

Ensuring universal access to contraceptives and diabetic medication and supply through a single-payer public system is a hugely significant improvement to our universal public health care system. It marks a fundamental step towards a truly comprehensive and universal national pharmacare program. Every day, nurses see first-hand the consequences of failing to provide equitable coverage for birth control and diabetic medication to our patients, from unwanted pregnancies to individuals who lack access to diabetic medications and supplies. They end up in our hospitals. This includes children and working Canadians. Patients divide their pills or go without them to buy food. This has to stop.

Canada's nurses have been lobbying parliamentarians like you for 30-plus years to move toward a universal national pharmacare program. Yes, it has to be single-payer and public, because that's what the evidence says is the best way to be fiscally responsible with our public dollars. That's what Canadians expect of us—to not have our health care services stop at a visit to the doctor or nurse practitioner.

Sadly, we are seeing many voices out there in support of the status quo. They say that Canadians are adequately covered by the patchwork system in place, and that a fill-in-the-gaps approach is the best way.

Nurses are motivated by the great care we can provide in this country. We say the best way to do that is through a universal public approach to prescription drugs. We urge you to follow 20 to 30 years of evidence, push ahead the passing of this bill and continue on the path of implementing a comprehensive, universal, national and public single-payer pharmacare program.

I stand proudly with all of you who will vote yes on Bill C-64.

Thank you.

[The Chair, Liberal, Sean Casey]

Thank you, Ms. Silas.

Next is the Canadian Organization for Rare Disorders. Dr. Durhane Wong-Rieger is joining us via video conference.

Welcome to the committee, Dr. Wong-Rieger. You have the floor.

[Dr. Durhane Wong-Rieger, President and Chief Executive Officer, Canadian Organization for Rare Disorders]

Thank you very much, honourable chair and members of the health committee.

Thank you for the opportunity to speak to you today. My name is Durhane Wong-Rieger, and I am the president and CEO of the Canadian Organization for Rare Disorders. I'm here to discuss Bill C-64 and, in part, its implications for the rare disease community in Canada.

I'd like to start, though, with a few facts that paint a bleak picture for Canadians with rare diseases. You may know that rare diseases affect over three million Canadians, the majority of whom are children. While most rare diseases affect children, we also know there are a significant number of adult-onset rare conditions that are being diagnosed.

Among the 7,000 known rare diseases, only 5% have an effective drug therapy. Unfortunately, one in three rare disease patients in Canada cannot access their treatments. In fact, only 60% of the treatments for rare disorders are made available in Canada, and most get approved up to six years later than they do in the U.S. or in Europe.

Even after the treatments are approved in Canada, many patients continue to face immense hurdles and delays in accessing new treatments due to the challenges related to the evaluation and funding of these medicines. When there are effective, available therapies, access can often be very challenging for patients. As you may know, they vary from one province to the other. As a result of these challenges, many patients experience an avoidable decline in functionality, and certainly many experience early death.

In an effort to respond to these challenges, on March 22, 2023, the federal government announced measures in support of Canada's first-ever rare disease drug strategy, including, at this time, a $1.4-billion investment for provinces and territories to improve access and affordability of rare disease medicines. This money had already been promised half a decade ago as part of budget 2019.

However, it's now been over a year since the funding announcement, and not a single penny has been spent to help fund rare disease drugs. While CORD supports efforts to improve access to medicine for all Canadians who need them, we're also concerned that the federal government has taken on another major commitment to fund a national pharmacare program when it hasn't even delivered on this promise to fund rare disease treatments—a promise that, as we said, was made over five years ago.

Notably, clause 5 of today's Bill C-64 would commit the government to long-term funding, beginning with products for rare diseases. We have to say it's unconscionable and unethical, and certainly really challenging for patients, to introduce a program designed to transform and save lives, and then fail to execute on it.

Moreover, given the lack of promised progress on rare diseases, what does that say in terms of the prospects for success of this pharmacare legislation? We need to see the prioritization for rare diseases in action. It was a promise made. When it comes to improving medicine access and affordability, CORD strongly believes that rare diseases represent the area with the greatest unmet need in Canada.

The federal government should focus first on rolling out the promised funding for rare disease treatments before undertaking another major pharmacare plan.

However, with respect to the bill itself, CORD has a number of comments. The predetermined categories, lists of medicines and proposed single-payer approach all risk limiting treatment options and potentially bringing everyone's level of coverage down to the lowest-common denominator. This is a concern.

Additionally, Bill C-64 outlines specific timelines for its key components, yet the rare disease drug strategy lacks a detailed implementation plan and time frame. The rare disease drug strategy must also be afforded clear timelines, publicly accountable milestones and opportunities for patient and clinical input. This is not in the current rollout.

Lastly, the formation of expert committees, as stated under Bill C-64, must ensure genuine advisory roles. CORD's experience with the current rare disease drug strategy implementation advisory group has highlighted significant issues with transparency, communication and accountability. Effective implementation of national pharmacare requires these committees to provide meaningful input, rather than service mere formalities.

I'd like to close by noting that Canada has an opportunity to become a leader in providing access to cutting-edge therapies that significantly impact patients' lives. We must aim high, ensuring that our national pharmacare program and the rare disease drug strategy deliver the best possible outcomes for patients with rare and common diseases alike.

Thank you very much for your attention. I'm open to any questions you may have.

[The Chair, Liberal, Sean Casey]

Thank you very much, and we'll now begin with rounds of questions, starting with the Conservatives' Dr. Ellis for six minutes.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you very much, Chair.

Thank you to everyone for being here again today. This legislation, sadly, is being pushed quickly without adequate consultation, but that's a whole other story.

Dr. Wong-Rieger, could I start with you, please? I tried to make a point here yesterday, and sadly, when the minister was here and two officials, they couldn't answer questions about the drug approval process. You talked a lot—not a lot but a fair bit—about the approval process and how long it takes in Canada.

Could you explain, perhaps, for the members on behalf of all Canadians how we're falling behind on how long it takes to get drugs approved in Canada?

[Dr. Durhane Wong-Rieger]

Certainly. First of all, I would just say that because the approval process is so complicated many companies do not want to come to Canada first. It takes too long. Quite frankly, it means then that, even for the drugs that come in, it's oftentimes months and sometimes years after they're brought into the other OECD countries, so that's the beginning.

We obviously have a multistep process. We have Health Canada, the regulatory process, which I must say has actually done a great deal to shorten the timelines. We then have to go to the Patented Medicine Prices Review Board, which provides guidance in terms of the cost, the maximum price of the drugs. It goes to the health technology assessment groups. Now in Canada, there are the drug agencies, CADTH and INESSS, which, again, adds months and sometimes longer than that to the process. The big challenge comes when, for the public drug plans, the drugs then go—if they're recommended by the technology assessment groups—to the pan-Canadian drug agency. There, they can actually take months and sometimes years.

We have drugs that have been sitting there for multiple years, even before they get picked up to be negotiated. They negotiate the price there. There is no timeline. There's no transparency. There's no input into the process, so there they can languish. Then even if they get a negotiated price, it is not necessary that every province lists these drugs, even though they signed on to say, yes, we will be part of it. Again, we have the problem that these drugs now, sometimes not just months but years later, are not even listed in the public drug plan. In some cases, they never get into the public drug plans. There's no way of making them be there.

This is the challenge, and we can say for patients, of course, it is a terrible problem, especially for these patients who are waiting for life-saving therapies. For rare diseases we oftentimes do not have another therapy. As I say, it's also a disincentive for companies to even bring the drugs to Canada, and we oftentimes have to really beg them to bring the drugs here because they know it is not only a long but also a very complicated process.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you very much, Dr. Wong-Rieger. I think then it's really quite fair to say that there doesn't appear to be any oversight on this process. Of course, when we look at some of the statistics from 2012 to 2021, there were about 460 medications that have come to Canada and only 44% have been here. Of course, that can certainly acutely affect those with rare diseases, as you've highlighted. Thank you for that.

You talked a bit about the government's announcements that they've made specifically around rare diseases and its failure to deliver. Do you have concerns that this is simply another photo op here and nothing's actually going to happen?

[Dr. Durhane Wong-Rieger]

I certainly hope not. I think there was sincerity around understanding the needs of Canadians with rare diseases. The money's there that was put into the budget, we've been assured. We are extremely concerned though that it is not coming out. Again, as I said, we've seen that the majority of that money, $1.4 billion out of $1.5 billion, is to be allocated through bilateral agreements.

This is, again, what we're hearing in pharmacare. What we know is that, well over a year later, none of these agreements have been put in place. We don't even know if there have been discussions around them. Whether it's just bureaucracy, whether it's just the cumbersome nature of the process, whether it's really hard to get provinces to agree, I don't know. However, this is not the way it's needed to be. We're hoping it's not a photo op. We're hoping that it doesn't become just a hollow promise. That's why when I said we were concerned about pharmacare coming out, one, does it delay getting the rare disease drug strategy out, and two, is it going to fall to the same kinds of issues that our drug strategy has?

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you very much for that, Dr. Wong-Rieger. On behalf of Canadians, you are very insightful.

Ms. Berg, if I can, I'll turn to you. I think we have a little under a minute left.

You talked about supply chains in Canada. From the list of medications we have seen, it appears that with some medications—let's just pick metformin, which is incredibly common—there's a suggestion that there may only be a single-source supplier.

Can you tell us a bit about how that may be a problem for Canadians with respect to drug shortages?

[Angelique Berg]

As I mentioned, when a government awards a contract to a single supplier, others have no incentive to stay in the market. I can't speak specifically to metformin, but there are other examples.

When one firm gets, let's say, 70% or 80% of the market, the other competitors are not going to make any money on this. They're likely going to stock the product, and it might go bad. It will expire and they will lose money that way. They're businesses. They need to cover their costs. Globally—and a lot of our pharmaceutical manufacturers are global—they will make the decision not to sell that product in Canada because they simply can't recoup the dollars. It's that simple. It's dollars and cents and economics.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you very much.

[The Chair, Liberal, Sean Casey]

Thank you, Ms. Berg.

Thank you, Dr. Ellis.

It's over to Dr. Hanley, please, for six minutes.

[Brendan Hanley, Liberal, Yukon, YT]

Thank you very much.

Thank you to all the panellists for appearing today.

I just wanted to begin by pointing out that in the testimony, Dr. Wong-Rieger, you gave.... I think one of the important pieces to highlight is how important this program is. This is Canada's first-ever strategy for rare diseases. I know Canadians, particularly the Canadians you represent, were very happy to see this.

I would interpret this as complementing pharmacare as part of the package, as it were. Admittedly, it requires some time for implementation. We're all looking forward to that.

I'm going to begin my questions with Ms. Silas.

Ms. Silas, you and I have had many discussions over the last couple of years about pharmacare. Thank you for the socks. On my socks, it says “comprehensive”, “accessible”, “universal”, “portable” and “public”. I understand that—

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

How long are the socks?

[Brendan Hanley, Liberal, Yukon, YT]

You have to unwrap them. The socks have been waiting for some time. I think they have been in storage.

Can you tell me a bit about that?

[Linda Silas]

We all remember the 2019 report from Eric Hoskins. Dr. Hoskins and I were planning the pharmacare party, and then COVID hit.

I have to join you in congratulations to Dr. Wong-Rieger. I've been on many panels with Durhane. When I read the brief on Bill C-64, I was as excited to see rare diseases there, because 20 years ago, we weren't talking about it.

I believe that bureaucratic rules and obstacles shouldn't stop us from doing the right thing. We are improving health and we are improving the lives of Canadians with this bill. It's a door open, and we need to move on it.

[Brendan Hanley, Liberal, Yukon, YT]

Thank you.

I wonder if you can talk about this from your point of view. You have travelled around the country on this. You have talked to frontline nurses everywhere in the country.

What is your perception about there being a fear that this is going to have an adverse impact on private insurers and on employment plans, like the one we enjoy as members? Maybe you can talk about what you think and what you've learned from other countries on what the effect of pharmacare will be on private insurance.

[Linda Silas]

About 90% of nurses are unionized, so they are not worried about themselves. They are worried about their patients, and that's why they gave us a mandate to work on a national pharmacare program.

As a union negotiator, I remember the days of negotiating with an insurance company when we had to beg to have a smoking cessation program, but the plan couldn't afford it because of the usage. We represent a membership that is 92% women. We could not add contraceptives. We won that fight.

I have a very small staff team here in Ottawa, but because it is so small, our plan is very restrictive. There are so many rules and so many restrictions that I'm just glad no one is really sick, because they wouldn't be covered properly. That is the game we play with insurance.

However, as a negotiator, I also know we will be at tables and asking for.... For example, I'd expect pharmacare to provide four pills a day, but an insurance company will provide the richer pill of one pill a day. When we talk to our members about it, they understand that. Their dear commitment is to those children who can't have puffers and are asthmatic, or to those children and parents who can't afford the better diabetic care programs. That's what they want us all to work on.

[Brendan Hanley, Liberal, Yukon, YT]

Thank you. We know there are concerns about the cost outlay to implement pharmacare. It will be an investment. It will cost money. We know that the reports such as the Hoskins report contain analysis showing that, overall, this is going to represent a cost savings to our health care system.

Can you comment on the financial cost and benefit of pharmacare such as we are now embarking on?

[Linda Silas]

I think you'll have great experts to talk about the dollars and cents later on. Our point of view is that the money's already being spent, and the money's being spent by Canadians who cannot afford it. They either pay for their drugs or pay for their food. One in five families can't afford their drugs.

The money Dr. Hoskins was talking about six years ago already was different. We have to give the support to the Parliamentary Budget Officer to look at a universal program, not a patchwork, and to come up with the right formula. As a taxpayer, I know the money is already being spent. It's just not being spent at the right place.

All the evidence from the economists we've worked with over the last 30 years tells us that the best way, similar to our health care system, is to have a public system provide the evidence with regard to the best drugs to give. That's probably more to you, Dr. Hanley, because you're a doctor, but when I met the minister yesterday, I said that it wasn't really up to him to decide what was on the formulary, which diabetic drug, and that a group of experts should deal with it. That's what we're promoting.

[The Chair, Liberal, Sean Casey]

Thank you, Ms. Silas and Dr. Hanley.

Mr. Blanchette‑Joncas, you now have the floor for six minutes.

[Maxime Blanchette-Joncas, Bloc, Rimouski-Neigette—Témiscouata—Les Basques, QC]

Thank you very much, Mr. Chair.

Welcome to the witnesses who are here for the first hour of this meeting.

Ms. Silas, welcome to the committee and congratulations for your more than 20-year commitment to the Canadian Federation of Nurses Unions. You are a proud graduate of the Université de Moncton. The people of Moncton are people we appreciate, but I have to admit I also appreciate the Université de Moncton, which proudly represents Acadians.

As you know, Quebec has its own drug insurance plan. We acknowledge that it isn't perfect, but it was established 30 years ago.

What more do you think the federal government could do than what the Quebec government is doing now, or that it could do better?