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THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY

EVIDENCE

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OTTAWA, Wednesday, September 25, 2024

The Standing Senate Committee on Social Affairs, Science and Technology met with videoconference this day at 4:16 p.m. [ET] to study Bill C-64, An Act respecting pharmacare.

Senator Ratna Omidvar (Chair) in the chair.

[Translation]

The Chair: My name is Ratna Omidvar and I’m a senator from Ontario.

[English]

I am the Chair of the Standing Senate Committee on Social Affairs, Science and Technology.

Today, we are continuing our study of Bill C-64, An Act respecting pharmacare. Before we begin, I would like my colleagues to go around the table and introduce themselves, starting with the deputy chair of the committee, Senator Cordy.

Senator Cordy: Thank you very much. Welcome to our committee. My name is Jane Cordy, and I’m a senator from Nova Scotia.

Senator Moodie: Rosemary Moodie, senator from Ontario.

Senator Burey: Welcome. Sharon Burey, senator for Ontario.

Senator Senior: Paulette Senior, senator for Ontario.

Senator Osler: Gigi Osler, senator for Manitoba.

[Translation]

Senator Cormier: Good afternoon. René Cormier, New Brunswick.

Senator Brazeau: Good afternoon. Patrick Brazeau, Quebec.

[English]

Senator Seidman: Judith Seidman, Montreal, Quebec.

Senator Pate: Kim Pate. I live here in the unceded, unsurrendered territory of the Algonquin Anishinaabeg.

[Translation]

Senator Mégie: Marie-Françoise Mégie, Quebec.

[English]

Senator Muggli: Tracy Muggli, senator for Saskatchewan.

The Chair: Thank you, colleagues.

Joining us today for our first panel, we welcome the following witnesses in person: From Diabetes Canada, we welcome Laura Syron, Chief Executive Officer; and Glenn Thibeault, Executive Director, Government Affairs. From Action Canada for Sexual Health and Rights, we welcome Deborah Owusu-Akyeeah, Co‑Director of Policy and Advocacy. Joining us by video conference, from the Juvenile Diabetes Research Foundation, we welcome Monica Kocsmaros, Chief External Relations Officer. Thank you for joining us today. We will begin with opening remarks from Ms. Syron, followed by Ms. Kocsmaros and Ms. Owusu-Akyeeah. You will each have five minutes for your presentations, followed by questions from my colleagues. Ms. Syron, let’s start with you.

Laura Syron, Chief Executive Officer, Diabetes Canada: Thank you, chair and members of the committee.

We know that having access to the right diabetes medications and devices reduces the risk of complications from diabetes and helps to avoid costly hospitalizations. However, these medications and devices can cost people thousands of dollars annually. In fact, based on a study by Diabetes Canada, the out‑of-pocket costs for drugs, devices and supplies for people in Canada who live with diabetes can be as high as $18,000 per year if they are solely reliant on public coverage.

For at least one quarter of people living with diabetes, especially those in health equity-seeking communities, these costs often mean they can’t afford to stick with their prescribed treatment regimens. This results in significant risks to their short-term and long-term health.

That’s why Bill C-64 is so important and why Diabetes Canada has been a prominent voice about it since its introduction. However, we continue to raise concerns about its implementation, just as we did this past May when we appeared before the House of Commons Standing Committee on Health. At that time, we spoke to the significant gaps in coverage that, unfortunately, persist for individuals with diabetes in Canada and which will continue to exist under the pharmacare program as proposed.

As we appear before you today, we believe these issues have not yet been resolved. Accordingly, we have three primary recommendations to improve Bill C-64.

First, ensure the public formularies are fulsome, inclusive and provide a continued commitment to the improvement of care.

Second, include a “do no harm” provision in the legislation, like the provision that was included in the dental care legislation.

Third, provide sufficient funding in Budget 2025 and beyond to fund a comprehensive national pharmacare program for diabetes medications.

Diabetes is a complicated condition with a constantly expanding compendium of new therapies and technologies, and they should be available as options for care. As the pharmacare program is developed, the public formularies should be re‑examined, not only to ensure more fulsome and inclusive coverage but also to support the adaptable, collaborative and individualized care that effective diabetes management requires.

Diabetes management strategies should align with Diabetes Canada’s clinical practice guidelines, or CPGs. These guide health care providers in making informed decisions about patient care. However, the current draft formulary for diabetes medications under the pharmacare program does not align with our CPGs, and it is limited in scope. It excludes many essential treatments and includes outdated products. We must see an expansion and update of the formulary to reflect the CPGs.

To help with this, we have developed a comparison report that we have shared with the committee to outline gaps in the plan compared to both our CPGs and the non-insured health benefits for First Nations and Inuit.

We, therefore, recommend a more developed comprehensive formulary, in consultation with people who have the lived experience of diabetes, health care experts, the provinces and territories and Indigenous communities.

Another concern which continues to be raised by our stakeholders is the potential impact on private health coverage for diabetes medications. We must ensure that individuals do not lose access to drugs that are already covered by their private plans and are not included on the public formularies.

The Minister of Health for Canada has stated publicly his expectation that there will be no changes to private health insurance coverage through this plan, and the Parliamentary Budget Officer has published his findings on costs for this program based on keeping existing private health insurance and public formularies in place. However, the language that is currently in the legislation outlining universal, single-payer, first-dollar coverage differs from those two statements.

We are, therefore, calling for the inclusion of a “do no harm” provision to ensure that there are no unintended consequences to those currently using private insurance coverage. Similar protections were included in the previously passed dental care legislation, which could be used as a model for this bill.

To be comprehensive, a national pharmacare program must be provided with the appropriate level of funding to ensure it covers a broad base of medications and eliminates gaps in coverage. We are, therefore, calling for the Government of Canada to increase and accelerate the planned budget allocation to the pharmacare program.

The initial commitment of $1.5 billion over five years should act as a base for funding, not a ceiling. With the yearly cost of diabetes medications estimated to be close to $4 billion per year, the initial budget allocation in 2024 — which is split between diabetes medications and contraceptives — only provides a baseline of support that is needed.

Since the announcement of Bill C-64, we’ve seen significant goodwill across the provinces and territories, including the recent announcement of a memorandum of understanding with British Columbia, but there is more to be done. There is also more to be done when it comes to an announcement from the government regarding the launch of its device access fund.

In conclusion, we continue to encourage Canada’s Parliament to proceed thoughtfully and with all people who live with diabetes in the front of their mind as it develops a program to improve access to life-changing diabetes medications and devices.

Thank you.

The Chair: Thank you. Ms. Kocsmaros, the floor is yours.

Monica Kocsmaros, Chief External Relations Officer, Juvenile Diabetes Research Foundation: Thank you, Madam Chair.

Good afternoon, members of the committee.

The Juvenile Diabetes Research Foundation, or JDRF, is the world’s largest charity focused on accelerating research to cure, prevent and treat Type 1 diabetes and its complications, as well as helping to make every day better for the people who live with it. We also advocate on behalf of the estimated 300,000 Canadians living with Type 1 diabetes, representing their voice on critical issues such as national pharmacare.

JDRF supports the goal of making access to medications and devices for treating and managing Type 1 diabetes equitable and affordable for all Canadians. Patient choice needs to be a priority.

Type 1 diabetes is a lifelong autoimmune disease in which a person’s immune system destroys insulin-producing cells in the pancreas, making them dependent on multiple daily insulin injections to survive. Managing diabetes represents a significant financial burden for Canadians impacted by the disease, and many treatments and devices remain out of reach for some Canadians. We appreciate the government bringing diabetes and its high cost to manage the disease into focus through Bill C-64.

While we align with the intention of Bill C-64 to provide barrier-free access to treatments for those living with diabetes, we would like to raise two recommendations and one area of caution to ensure that Bill C-64 meets the needs of all Canadians living with Type 1 diabetes.

First, based on consultations with health care providers and those living with Type 1 diabetes, we would like to see the ultimate list that is developed reflect what is in the clinical practice guidelines established by Diabetes Canada. It is important that physicians have therapeutic options to address the wide variations in individual patient responses to and tolerance of any particular drug so that patients can access these, as one insulin may work well for one person and not another. It is very individualized care. And as health care providers refer to these clinical practice guidelines, the insulin listed on them should be available for patient care across the board.

By focusing pharmacare efforts on the most vulnerable — those who are uninsured or underinsured — you can increase the treatment options available to them to help eliminate side effects, improve health outcomes and create a more level playing field. This list should also be updated as the clinical practice guidelines are updated.

Second, national pharmacare should not preclude anyone from using existing insurance coverage to access insulin. There needs to be a plan in place to ensure that Canadians can still access the same insulin through insurance coverage today as when Bill C-64 is implemented.

We would like to raise our area of caution on how this program is implemented: the changes in insurance coverage. The bill will help to ensure that those who are underinsured and uninsured can have affordable access to the insulin they require, but it also creates a risk whereby the existence of a national formulary may motivate private insurers to withdraw coverage of insulin from those who currently rely on private insurance for their treatment.

While we know the details of a special device fund are coming, we would welcome more information and consultation on that as soon as possible. Many Canadians living with Type 1 diabetes rely on these life-changing devices to improve their health outcomes and reduce life-threatening complications. The longer we delay in getting this fund in motion, the longer Canadians without access have to wait.

JDRF is supportive of legislation that improves access to medications for Canadians living with Type 1 diabetes. We are supportive of this legislation if it lives up to its intentions of equitable and affordable access and does not leave any Canadian worse off. We expect the final national formulary, as it relates to treatments for Type 1 diabetes, to reflect the clinical practice guidelines to ensure Canadians have access to the insulin they need. We also want to ensure that Canadians relying on private insurance will not be impacted by the implementation of this legislation.

It is critical to get the implementation of this legislation right to ensure it delivers on its promise not only for those living with Type 1 diabetes but also for all Canadians who will benefit from this program in the future.

Thank you.

The Chair: Thank you so much, Ms. Kocsmaros. Now Ms. Owusu-Akyeeah, the floor is yours.

Deborah Owusu-Akyeeah, Co-Director of Policy and Advocacy, Action Canada for Sexual Health and Rights: Thank you so much, committee.

Action Canada for Sexual Health and Rights is a national organization championing sexual and reproductive health and rights both in Canada and around the world. As the Planned Parenthood Federation of Canada, we work closely with our network of sexual health centres that deliver care to communities across the country. Collectively, they serve hundreds of thousands of Canadians.

Our team also runs programs used by thousands of Canadians every year to connect to sexual and reproductive health services. The work we do gives us invaluable insights into who does not receive the care they need and what it looks like in real terms.

One thing is very clear for those of us who work on the issue of health care access: This bill, while not perfect, must pass. It is a crucial step toward bettering the health outcomes of Canadians. This is why Action Canada is part of a wide coalition of health organizations and labour unions that, together, represent millions of Canadians. We support the passage of this bill as a step toward a universal, single-payer, public, first-dollar pharmacare program. This is an area of broad consensus for civil society organizations serving Canadians. It is also a sign that people’s demands that our health care system be a political priority are actually being heard.

We celebrate that contraception is one of the two classes of drugs chosen to be rolled out in the first phase. The lack of affordable and accessible contraception is a significant public health concern and disproportionately affects women. Most people in Canada continue to use the least effective methods of contraception simply because they are the ones that cost the least.

Of the pregnancies every year, 40% are not planned. Family planning is important to the well-being of individuals, families and communities. Of those who accessed abortions in British Columbia, 70% reported not having coverage for contraception. This goes against misleading statistics that imply most Canadians are insured and that we don’t need this bill.

Before British Columbia introduced universal coverage for contraception, the data showed that 40% of those who did access contraception before the policy was rolled out paid 100% out of pocket, and 20% more contributed copay. This means limited options for those who can’t afford to choose contraception over rent. After the introduction of the program, it dropped to fewer than 10% paying out of pocket for specific methods preferred which are not covered by the public program.

Studies have shown a rapid increase in contraception dispensations with a shift to the most effective methods, like IUDs, from the less effective and less expensive methods. The impact on individuals is a factor, but we also need to consider the impact on families and communities at large. These impacts are intergenerational.

The Turnaway Study looked at the long-term impacts of being denied an abortion, which gives us insight on the profound implications of the absence of family planning tools. Women who were denied an abortion have worse physical health outcomes over time, with increased incidences of chronic pain and hypertension, among those who continued an unplanned or unwanted pregnancy.

These vulnerable people who deal with significant economic hardships are also more likely to live in poverty, have lower credit scores and experience increased debt. These folks are less likely to be employed full-time and are more likely to rely on public assistance. In addition, these individuals are more likely to remain in contact with violent partners and struggle with providing for their existing children. Their children are more likely to live in poverty and face developmental challenges.

Contraception also provides an excellent case study for the problem with the fill-the-gaps approach. Contraception is a stigmatized prescription, and many of those individuals who are vulnerable, coerced or dependent on relationships to a plan holder may not actually have the ability to access coverage. This is particularly true in the case of abusive relationships and for youth.

We dispute the simplistic depictions of insurance coverage and the misleading information that has been shared which imply that Canadians do not need a universal pharmacare program. The reality on the ground says otherwise.

To conclude, universal pharmacare is cost-effective and strengthens the infrastructure of our society over the long term. It is a preventative approach to many complex issues that put pressure on the health, social and education sectors. Health care advocates are clear: This bill matters and must pass as a first step toward a universal pharmacare program that Canadians can be proud of.

The Chair: Thank you very much to our witnesses for their opening statements. We will now proceed to questions from our colleagues. The first question will go to the deputy chair, Senator Cordy.

Senator Cordy: Thank you to all of our witnesses. You have all presented very compelling arguments in favour of this pharmacare bill. I thank you very much for what you’ve said.

My first question goes to Ms. Owusu-Akyeeah. You said that the bill, while not perfect — I’ve been in the Senate for a long time, and I’m not sure there’s been a perfect bill yet, unless it’s a one-sentence bill — is a first step. You talked about the broad consensus for this with health care professionals.

I wonder if you could expand a little bit on this. I was talking to a group this morning relating to this bill. I think we’re all receiving many phone calls and sitting in meetings with people, but because we have a limited period of time, we can’t hear from everybody that we want to. They spoke about the fact that we actually have a pharmacare program within the hospitals, where if you’re actually in the hospital, you receive free medication. The problem is, oftentimes, you end up in the hospital because you don’t have the proper medication to begin with. I wonder if you can talk about that.

You also said that contraceptives can be a stigmatized pharmaceutical. That was part of the discussion we had: A teenager goes to their parents and says, “I have to get this on your health care plan,” whereas that wouldn’t be the case. Ms. Syron, perhaps you could also comment on these questions.

Ms. Owusu-Akyeeah: Absolutely. To speak to the first comment around pharmaceutical access in hospitals, although that’s correct, the broad consensus that civil society organizations are really trying to speak to is access. With a universal pharmacare program, access is something that would ensure consistency from coast to coast to coast. Right now, for people who may have access to a particular pharmaceutical plan, these plans don’t cover all particular types of contraceptives. The research shows that when people are able to choose a contraceptive that fits for them — no two bodies are the same — they’re more likely to use it. When things are regulated to something like a hospital which is still inaccessible for many people, this limits access to contraceptives that could actually benefit people’s lives.

With this bill as a first step, what we can see is further access to the most useful contraception that people can choose to suit their needs and for their best well-being outcomes.

Senator Cordy: Thank you. Ms. Syron, what are your thoughts?

Ms. Syron: Thanks for the question. Diabetes is probably a disease that’s a perfect example of what you’re talking about.

First of all, I should say I’m sitting here wearing a professional hat as the CEO of Diabetes Canada, but I also live with Type 2 diabetes, so I speak today as someone with the lived experience of this disease. In fact, with diabetes, managing your disease before you get to a hospital is the trick. With diabetes, for those of us who live with it, we’re really trying to put these complications at bay. There are five main complications when you live with diabetes: 40% of all heart attacks in this country come from diabetes, and it’s 30% of all strokes, blindness, amputation and kidney failure. With all of those, you would be in the hospital, and you would have that.

If you had access to the medication that helped prevent or slow down those complications, that’s what we’re talking about. We’re trying to give people medication at the right time so that they can manage their days and never end up in the hospital. And if they do, it’s a lot further away.

You mentioned the stigma, senator. Diabetes is a hugely stigmatized disease. Even for myself living with Type 2 diabetes, people say to me, “You’re lazy, you brought it on yourself or you didn’t live well with it.” I have had people say to me, “Is that the genetic kind or the kind you gave yourself, Laura?” There’s a lot of stigma, and we know that stigma prevents people from sticking to their regimen.

Senator Seidman: Thank you very much to our witnesses for — I think as my colleague said — the compelling testimony.

If I might refer to the brief from Diabetes Canada, in your conclusion specifically — I think you highlighted the point, but if I may — you say:

While a significant step forward for diabetes health-care support in Canada, Bill C-64 needs to expand its formulary to not only ensure more diverse coverage, but to support collaborative and individualized care which is the cornerstone of the clinical practice guidelines. . . .

It’s “individualized care.” You continue:

The limited formulary makes individualized care nearly impossible and may negatively impact our health-care system and the health of people living with diabetes by offering sub-optimal therapies . . . .

You also say:

. . . a national pharmacare program with a limited formulary has the potential to impact choice; health-care providers may look to the formulary as a definitive list without collaborating with the person living with diabetes and discussing all therapeutic options.

In addition to a formulary that doesn’t correspond to the clinical practice guidelines, you also emphasize the fact that Canadians must keep their private insurance to be sure they get the medications that they need, and I believe, Ms. Kocsmaros, you said the very same thing.

Perhaps you haven’t heard the testimony from our Parliamentary Budget Officer last week. He was very clear that now we have a market-based incentive for private insurers to discontinue coverage of diabetes medications and contraceptives because they will be covered by this pharmacare program, which would mean that Canadians would lose their private insurance coverage in a gradual shift. He was very clear about that.

Why would private insurers cover Canadians if the public system will pay for it? In other words, taxpayers are going to pay. He calculated in the amount of money it was going to cost that provincial insurance and private insurance would continue.

Would you support an amendment in line with what the Parliamentary Budget Officer proposed to us, which was requiring a national pharmacare program to be the second payer in order to ensure that no Canadian living with diabetes risks losing their private coverage?

Ms. Syron: Thank you for that question first of all, and thank you also for reading the report that we put together. It’s really important to us. Diabetes is not a one-size-fits-all disease. As my colleague from JDRF talked about, different medications work for different people, and it’s not just about cost. It’s about our bodies and what works and what doesn’t.

What I would say to your question is that we are supportive of pharmacare — anything that gets people more access to the diabetes medications that they need — but our second recommendation that we feel very strongly about is we can’t do harm in doing that.

We believe the mechanism “do no harm” to be in learned minds around the table. For example, in dental care, there were some great clauses around the fact that there is a way to do no harm. So if you’re already covered, that’s okay.

How might you do that, and what is the mechanism to do that? What we would say is we support this bill, but our concern is if it’s going forward with a “do no harm” provision for all the reasons you just mentioned, senator.

Glenn Thibeault, Executive Director, Government Affairs, Diabetes Canada: If I can make a comment.

The Chair: I’m sorry; we can’t, but I’m sure this question will be posed again and again because it’s one we are grappling with.

Senator Osler: Thank you to all the witnesses here today. I have a question for all three of you. I would like to start with Action Canada, then Diabetes Canada and then JDRF.

Numerous stakeholders have expressed varying concerns about Bill C-64. For one, there are no national standards or criteria to ensure consistency in a national pharmacare program across Canada. And the final program will all depend on the to‑be-negotiated bilateral agreements between the federal government and each provincial and territorial government. At least one province has indicated their desire to opt out.

My question is this: Do you think a national pharmacare program should differ from province to province to territory?

Ms. Owusu-Akyeeah: For our work at Action Canada, we look at access to sexual and reproductive health services, and we know the issue that remains in this country is that access does not look the same from province to province. Having that consistency across the country is necessary for people to have access to important services and medication that will benefit their lives. My opinion is that there should be consistency from province to province to territory in order for this to fully materialize and make a better impact on people’s lives.

Ms. Syron: My answer to the question is we feel very strongly about a wide and fulsome range of options for people with diabetes because, as I said, diabetes is not one size fits all. Our way of doing that is through our clinical practice guidelines. Those provide consistent standards. Those are very highly evidence-based. These are the medications that the latest science says to do that. We would always come back to this, and we would do this federally, provincially and territorially: How does your formulary match up to the guidelines? Consistency is very key. We actually have a tool that is clear for people with diabetes in Canada; this is the consistent formulary, and right now it is different province by province.

This is what I would come back to, senator: In the end, we want for people living with diabetes to have better access to the medications they need, and if this is a stepping stone to do that — using our clinical practice guidelines to help make sure it’s the right compendium — then we would be supportive of it.

Senator Osler: Thank you. And how about the witness from JDRF?

Ms. Kocsmaros: Thank you for the question. I would echo what my colleague has to say. The health of Canadians should be top priority for all levels of government, full stop, and there should be a consistent approach in terms of what is covered for people living with Type 1 diabetes. The consistent approach should be that any public formulary, whether provincial, federal or territorial, should reflect the clinical practice guidelines that have been established. We don’t want to continue seeing a patchwork of coverage, like winning the postal code lottery depending on where you’re living. At the end of the day, that consistent equitable coverage across all provinces and territories is what we would be looking for.

Senator Osler: Thank you to the witnesses.

[Translation]

Senator Mégie: My question is for Ms. Syron from Diabetes Canada. The Conference Board of Canada submitted a brief on the costs associated with diabetic foot complications. We know that this complication is very costly in terms of care, services and medication. Has any organization done a cost-benefit analysis? I’ve asked the question before, and still there’s no-cost benefit analysis on the table. We’re told it will cost the government a lot of money. However, if we managed to prevent major complications, is there a benefit to be gained? Do you have any data on this?

[English]

Ms. Syron: It’s a great question, and I wish I could answer to you that we have more data than we have. In fact, one of our challenges is that diabetes data is collected very poorly in this country, and that’s something we speak about a lot with governments. In fact, it’s even sometimes hard to learn how many people live with Type 2 diabetes and Type 1 diabetes, let alone the complications. The honest answer to your question is there isn’t a clear data report that I can hand to you to show the results of adding heart attacks, strokes, kidney complications and amputation altogether. A lot of data says — and this underpins our guidelines — that the more you can treat upstream to avoid those complications, it will be economically valuable, and, most importantly, it provides a better quality of life for the people living with the disease.

[Translation]

Senator Mégie: Thank you. I heard you say in your opening remarks that people should expect unintended consequences if the bill is tabled as is. Did I understand you correctly? What would those unintended consequences be?

[English]

Ms. Syron: Essentially, what I was speaking about there is if there is no clause around “do no harm,” the concern would be what has been raised here already. I’ll use myself as an example. I’m on two drugs to manage my diabetes. One is on the current formulary attached to this legislation and one is not. Right now, the one that is not covered is covered by my private insurance.

If my private insurance decided to stop covering that, then I would have to pick up that cost myself.

The unintended consequences would be that, financially, people may actually be worse off in terms of being able to afford the drugs. The very purpose of this bill is to get more people on the right drugs, but the unintended consequence could be that fewer people are on the right drug, and no one wants that here.

Ms. Kocsmaros: Once again, our goal and our hope is that the intent of this bill will improve equitable and affordable access for the Canadians who currently cannot afford their life‑sustaining therapy of insulin. The mechanism by which that can be achieved is to be determined. Based on the way that any of the terms are defined, I’m unsure — I’m not a legal expert — if that would preclude anyone from continuing to access their existing insurance coverage. I don’t see any language in there that states this, but if there is that risk, then we would want to find a way to mitigate that risk and ensure that people could still access their existing coverage.

Senator Moodie: Thank you to the witnesses here today. I’m a little puzzled by what I’m hearing because a formulary that is defined by pharmacare is going to be administered across this country equally. Whatever drug is on that list is going to be available in every province across this country. But I don’t think that’s what the concern is. I think the concern is which drugs are chosen.

I also want to make another comment which is introducing private coverage — considerations of who will pull back and who will continue to support their clients currently is where we change equity and availability, because different people will have different levels of coverage based on their private coverage. That is a different discussion and maybe where I would ask you this: What do you think needs to be done in terms of insurers as we implement the bill, potentially? What needs to be in the bill to ensure that the drift away from coverage does not occur?

My second question is this: Do you think that, based on all the discussions we’ve heard about treating upstream illness to prevent complications downstream, it would be better to have a pharmacare bill that provides even some of the drugs that we see as ideal and would allow people to get some coverage, not necessarily the Cadillac version but basic coverage?

There are two questions in there. I’m focusing on diabetes because most of the conversation is around diabetes.

Ms. Syron: The first question is the concept of the drift away from coverage. I would come back to this “do no harm” provision. This is, for us, one of our three recommendations.

Second, it is very essential that there be some language in this to specify that as it’s implemented, we do no harm. I actually love your language of drifting away from insurance. I think that’s what we’re looking for: There are assurances in the language within the bill, like there was in the dental care legislation, that if you have coverage, you’re going to keep it.

That leads to your second question, which I think is great. Is it better to have some than none? If you’re someone who is completely uninsured for diabetes right now — there are quite a few of them in this country — and just in case you don’t know, there are 4 million of us who live with diabetes in this country. It’s a very prevalent disease. It’s a big number. People are often surprised by how many people live with diabetes in this country.

We don’t know the exact number, but we know there is a good percentage of those who are uninsured, again going back to the data question. If you’re completely uninsured, absolutely, this pharmacare bill is better going forward.

In addition to that, when thinking about a more fulsome formulary, it’s not the best way to think of it as a Cadillac version, because as a person who lives with diabetes, it’s not that I went from a cheaper drug to a more expensive one. I actually was looking for the drug that manages my blood sugar. The way my body is genetically made up is different than your body. Actually, the cheaper ones might work for me. It’s actually less around the following: This didn’t work out, so let’s try this. What didn’t work is not about money. It’s about trying it for a while. Is your time and range good? Is your blood sugar being managed?

The answer to your question is it’s better to have some than none, but also think about the formulary almost as a tool box so that when I’m sitting across from my health care provider, we can try to manage Laura’s diabetes best.

Senator Moodie: What is the percentage of people who rely on medications that are not on these lists?

The Chair: We will come back to that question.

[Translation]

Senator Cormier: My first question is for Ms. Syron. You made your case very well. You need two diabetes medications: one would be covered by this new plan and the other by your private insurer or not. I’d like to understand the challenge when it comes to private insurance. If this new public plan covers one diabetes drug, why would the private insurer refuse to cover the second drug you need?

[English]

Ms. Syron: You would probably have to ask the private insurers that. Our take on that is, especially in diabetes, there has been big investment in this area and many new medications coming. As new medications come, whether it’s in cancer or diabetes, the public plan starts to look at the following: What is it? How many people might use that? What are the costs of that? That takes time.

Also, different employers sign up for different levels of plans. You may have an employer who is almost covering the basics but won’t go much beyond, and that depends on the company and what they’re willing to cover.

[Translation]

Senator Cormier: Thank you for that answer.

According to section 8 of Bill C-64, having held discussions with the provinces and territories, the minister must ask the Canadian Agency for Drugs and Technologies in Health to draw up a list of essential prescription drugs and related products that will serve as a starting point for the development of a national drug list for a national and universal drug plan. As I understand it, the starter list does exist and drugs will be added to that list. Are you concerned that the drugs needed for diabetes won’t be included on this list that’s being drawn up?

[English]

Ms. Syron: Yes, of course, because these are life-sustaining drugs. We are concerned, but, again, there are already standard clinical practice guidelines that we hope would be referred to in that discussion because this is evidence-based.

Diabetes Canada’s clinical practice guidelines are global leaders if you’re going to treat someone, so if it’s on the clinical practice guidelines, I’m hoping that is making it into the discussion. But back to the other question — if we have to start with smaller steps and we get some, and people who are completely uninsured get on and move forward — my hope would be absolutely. Hence, the first recommendation is ensuring it’s comprehensive and fulsome.

[Translation]

Senator Cormier: Am I to understand that we can’t say that the list being drawn up won’t include the drugs you need? We’re unsure because we don’t have the list; am I understanding correctly?

[English]

Mr. Thibeault: There is an example that I’d like to use. On the current background list that was presented when the legislation was brought forward, there are insulins that are listed on this list. Two of the insulins that are listed are very important for about 300 or 400 people in this country who use animal‑based insulin. Are they important? They’re very important for those people who use it, but, as our colleague from JDRF said, we are looking at over 300,000 people who use insulin every day. There are 300 to 400 people who use the animal-based insulin, and that’s essential for them. You have to really consider the broader picture of making sure you’re including all of the medications because they’re essential to each individual.

That’s why we continue to push back and say the background list of this formulary needs to include as many of the clinical practice guidelines as possible to make sure that individualized care can be included in all of this aspect.

Senator Cormier: Thank you.

Senator Bernard: Thank you to all of you for being here. I have a couple of questions and a comment. I think I’m going to start with Ms. Syron.

Your comment about stigma has led me to make a decision to disclose that I live with Type 2 diabetes. I have lived with it for over two decades. I’m very well managed, and two of my three medications are not on that list. When I read your report and I looked at the list, I think the questions you were asking speak to my lived reality. But it’s not just my reality; probably half of my family members have diabetes, and there’s a high prevalence in our community as well as in First Nations communities.

I’d like to ask the question about the different population groups that are most impacted by cost-related non-adherence. What difference would this legislation make?

Ms. Syron: Thank you for that question. Thank you for disclosing because sometimes that’s a very big step. It certainly was for me.

Of the 4 million people who live with diabetes, almost 30% are from health equity-seeking communities. That’s 30% of 4 million people. Those four communities, broadly speaking, are Indigenous communities as number one and also Black communities, South Asian communities and East Asian communities.

What we also know — and this is very similar to some of the statistics — is that those are the people who actually have the least access for a whole bunch of other socio-economic reasons. In fact, the people who are most impacted by the disease are actually the ones who have most trouble accessing it. That’s why we’re a strong voice for it because diabetes impacts those communities at much higher rates. Again, the sooner you can help people gain access, the better their long-term outcomes will be.

Senator Bernard: How much of that higher prevalence is related to the social determinants of health for those groups that I actually refer to as equity-deserving and not equity-seeking?

Ms. Syron: It’s a great question. For sure, socio-economic status and socio-economic factors play a big role, but so do genetics and environmental factors. In the Indigenous population, so would trauma from colonization. Increasingly, we’re seeing that mental health impacts diabetes, and that can be a burden carried by some groups more than others.

There’s a mix of it, but certainly socio-economic status is a big portion of it. However, it’s not all of it.

Senator Bernard: You’ve identified some of the other social determinants of health, or what we might call structural determinants of health, so there’s that intersectionality.

Ms. Syron: There’s income and education. If you look at people who haven’t graduated high school compared to people who have, it’s almost twice as much diabetes prevalence, as an example.

Senator Bernard: Thank you.

Senator Pate: Thank you to our witnesses. My question is for each of you, starting with Action Canada, then Diabetes Canada and then the Juvenile Diabetes Research Foundation.

I’ve just come back from international meetings around pharmacare, and one of the things that was very clear was that a bigger issue is certainly the privacy that drug companies have and that they retain in terms of their negotiations. One of the things that struck me was this: In countries with a universal, single-payer system, voluntary private insurance companies remain involved and continue to fund drugs that aren’t funded through those universal, single-payer insurance processes.

I noted that the Hoskins report talked about the fact it would save employers up to $750 per employee per year to have this kind of model. When employers were surveyed, rather than talking about cutting private coverage in response, 85% of employers said they would invest such savings in providing other types of coverage or health benefits to employees.

With that in mind, I’m curious whether you would agree that this likely indicates that private insurers in Canada are also likely to continue covering medicines, in particular diabetes and contraceptive medications that are not currently covered in the proposed single-payer system that Bill C-64 introduces. And more generally —

The Chair: Senator Pate, there are three colleagues whom you want to answer the question, and you have less than a minute each. I’m sorry, but you want the answers, right?

Senator Pate: Yes, I do.

Ms. Owusu-Akyeeah: I’ll just add that, as I mentioned earlier, we are standing in broad consensus with many labour unions. I can list them all. I think a key piece of that is there is an opportunity for private insurance companies to cover in addition to what’s going to be publicly covered. If union leaders didn’t consider this, they wouldn’t be standing in solidarity with organizations like Action Canada.

I would like to stress that this is an opportunity that’s being identified by those who are providing coverage plans for workers across the country. I think it’s a great opportunity for us to consider with this bill.

Ms. Kocsmaros: Thank you for the question. We believe that there is a risk that insurance coverage could be withdrawn with the implementation of a national pharmacare program, but it’s not something that is a certainty. If this type of model would work, we would absolutely be in favour of having private insurance continue to be part of the system in covering anything that isn’t part of the national formulary.

Ms. Syron: As you said yourself, there are certainly jurisdictions where the evidence is that the insurance companies don’t walk away. So there’s that evidence. We don’t know what would happen in Canada.

Again, Diabetes Canada’s position would be that we would love to see a “do no harm” clause so that we can really assure people living with diabetes that this wouldn’t happen.

The Chair: Thank you very much, Senator Pate. I apologize.

Senator Brazeau: Thank you to all of you for being here. A special hello to Mr. Thibeault who, once upon a time, used to be a member of Parliament here several moons ago. Time flies, doesn’t it?

Mr. Thibeault: I am here and feel great.

Senator Brazeau: Obviously, you have worked with First Nations communities, and diabetes is a predominant issue with respect to that population. We had the minister here last week, and I talked about non-insured health benefits. Part of the responsibility of the federal government is to provide non‑insured health benefits.

In your opinion, do you believe this may change, hamper, affect or not affect what the current system is for First Nations people in getting the medications that they need?

Ms. Syron: Soon my colleague Céleste Thériault — who is sitting right there — who represents the National Indigenous Diabetes Association can help answer that question. But for us, the Non-Insured Health Benefits program is a model that we would like to see because in there are the medications, the supplies, the devices, et cetera. Again, our hope would be that with a “do no harm” clause in legislation like this, no one living in this country is losing anything. That would be our hope.

Senator Brazeau: Hope? Okay.

Ms. Syron: That would be our hope.

The Chair: Ms. Syron, the table is having problems finding the “do no harm” clause. We studied the dental benefit legislation. If you can send it to us, that would be helpful.

Senator Brazeau, I did not want to cut you off, so please go ahead. Do you have any further questions, Senator Brazeau?

Senator Brazeau: That’s it. Thank you.

Senator Burey: Thank you so much for being here and for your expertise, and for bringing some data with you.

As we’re talking about the various medications, were you consulted regarding the medication list when this was being developed? This question is for everyone. Were you consulted regarding what would be on the medication list? You spoke about the clinical practice guidelines.

Ms. Syron: I can go first. We were not consulted.

Senator Burey: You were not consulted. I just wanted to have that out there.

The next question is this: In the bill, we have a committee of experts. We know about Canada’s Drug Agency, but I wanted to hone in on the committee of experts. Knowing that you weren’t consulted, do you have any comments on who should be on the committee of experts? Do you have any kind of guidelines surrounding that?

Ms. Syron: Yes, and Mr. Thibeault can add to this if he wants. For us, health care providers — and there are a range of them if you live with diabetes, particularly those who are involved in the clinical practice guidelines work that we do — should be involved in that expert committee because they will understand the broad range of that. I think people with lived experience need to always be at the table. What do they say? Nothing about us without us. We need to see that.

In terms of implementation, I think there should be people with drug plan experience regarding how this actually unfolds and how it looks. That’s way beyond my expertise, but that would be very important so that it’s a smooth transition. I don’t know if there’s anything you wanted to add to that.

Mr. Thibeault: I would just say drug plan managers, and don’t be afraid of pharmaceuticals. You need all of those educated voices around the table to make sure you’re getting the best information possible, as those whom we represent are also at the table and have their voices heard.

Ms. Owusu-Akyeeah: Just to add, Action Canada has an associate network of sexual health centres across the country. I think it’s really important to hear from them, especially those who are actually providing contraceptives to service users across the country. They would be very useful to have.

Of course, 9 million people of reproductive age would be benefiting from this, so if there are users of contraceptives who could be engaged with and consulted, those would be the people we would suggest you engage with.

Senator Burey: Thank you.

Senator Senior: Glad to have you all here. In light of the imperfections that you’ve noted, what would you see your roles being moving forward, should this become law? What would be the roles of your organizations, considering what you’ve already been doing?

Ms. Owusu-Akyeeah: Excellent question. This is something we’ve been thinking about a lot, and we’ve been speaking to advocates across the country for months now about the next steps: That includes ensuring people know that it doesn’t end with the bill passing. There are memorandums of understanding that need to be signed at the provincial level. There are conversations that need to take place with provincial governments — people explaining the need for this to follow through. This is something that I know we will be working on with many of our colleagues across the country to ensure that folks know what the next steps are so that they are best prepared to speak to decision makers at the provincial level to make this a reality.

Ms. Syron: I think there are three answers to that question. The first and most important is we would continue to be the voice of the 4 million people who live with diabetes. We would make sure that this voice continues at the table.

Second, we’ve had the same issues. When this was first announced, we got a lot of calls like “Can I go to my pharmacy tomorrow?” We have to manage expectations. We have to really explain to people that if this comes, this is what it means. We also had questions from people such as, “I don’t see my insulin on that list. It’s the only insulin that works for me. What does that mean?” So we’ve had some nervousness.

The last thing for us is this: We have experts who put those clinical practice guidelines together. We have a strong network of diabetes health care providers, and we’re happy to provide access to those.

Ms. Kocsmaros: I would echo that as well. We’re also influencing provincial governments to reflect the clinical practice guidelines in the public formularies that they adopt which are potentially part of the national pharmacare program.

The Chair: Thank you so much to our witnesses for being with us online and in person. In regard to Senator Moodie’s question about the percentage of people covered, I think it’s on the record. Could you kindly provide us with an answer in writing? That would be helpful.

Senator Seidman: I’m sorry; I thought the question was about percentage of medications.

The Chair: I knew there was a percentage involved.

Senator Moodie: What is the percentage of people who rely on medications that are not on the formularies?

The Chair: Thank you, colleagues. Thank you again to our witnesses for providing us with your testimony.

Senator Jane Cordy (Deputy Chair) in the chair.

The Deputy Chair: My name is Senator Jane Cordy. I’m the deputy chair of this committee, and I will be chairing this portion. Welcome to our witnesses.

For our second panel, we welcome the following witnesses. Joining us in person, from the National Indigenous Diabetes Association, we welcome Céleste Thériault, Executive Director. Joining us by video conference, from the Health Association of African Canadians, we welcome Dr. Lisa Dennis, Co-President Elect; and Sharon Davis-Murdoch, Co-President, all the way from Dartmouth, Nova Scotia. Thank you for joining us today.

We will begin with an opening statement from Ms. Thériault, followed by Ms. Davis-Murdoch and Dr. Dennis, both of whom will be sharing their five minutes, I understand.

Ms. Thériault, the floor is yours.

Céleste Thériault, Executive Director, National Indigenous Diabetes Association: Thank you, chair and honourable members of the Senate. The National Indigenous Diabetes Association, or NIDA, is based in Winnipeg, Manitoba. It is an honour and privilege to speak about Bill C-64 as it relates to all Indigenous people in Canada.

I am here to express our support for Bill C-64, the national pharmacare program, and to urge the Senate to pass this bill.

Since 1995, NIDA has worked tirelessly to combat the rising rates of diabetes among First Nations, Inuit and Métis peoples. The need for equitable access to diabetes medications is urgent and cannot be overstated. Bill C-64 is that first step to being able to have coverage for Canadians, including Indigenous people, for their diabetes medications and contraceptives.

As we know, Indigenous peoples face significant health disparities, particularly in managing chronic conditions like diabetes. The passage of Bill C-64 is critical in making sure we are addressing the most vulnerable and most important individuals in their care as they move along. We want to make sure that those who do not fall under the Non-Insured Health Benefits program — like non-status First Nations who may not have access to their documentation to receive status under the federal program and Métis individuals who currently fall outside the scope of the Non-Insured Health Benefits program — would greatly benefit from this program.

The time to act is now.

While we support the passage of this bill, we want to highlight important implementation concerns that can be addressed once the bill is passed after reporting back to the House of Commons. It’s crucial that the rollout of the program be done in a way that does not inadvertently disadvantage Indigenous people, particularly those already covered under the Non-Insured Health Benefits program or those who face socio-economic barriers to accessing government services.

There are some key recommendations that we have. One is to ensure that coverage under the Non-Insured Health Benefits program for status First Nations and Inuit beneficiaries remain. That means that whenever there is overlap, there’s clear communication so that there is no confusion from the federal government about how someone receives access to their drugs. This should be done clearly before the rollout.

We also want to make sure that the formulary that is proposed is a floor — not a ceiling — in making sure there’s inclusivity for diabetes medications, knowing that it is a complex disease that might require different pharmacological care for different individuals. We also want to make sure that if any generics are unavailable, the brand names would be available. Most importantly, when making bilateral agreements with the provinces and territories, the federal health minister must ensure that we do not use means-based testing for our people to access their medications. Means-based testing is an administrative burden for individuals who might not be able to access their medication. As soon as you have a form and extra steps due to not filing taxes, that person is not receiving the care they need. They might be the person who ends up in the hospital because they weren’t able to manage their condition beforehand.

We also want to make sure that we are not developing a two‑tiered pharmacare system.

Once the legislation is passed, we must ensure Indigenous representation at the expert committee table that the health minister proposes in order to ensure that the nuances of our people, whether that’s status First Nations, non-status First Nations, Inuit or Métis, are properly taken care of.

We really believe that this bill offers transformative change to how we care for Canadians, including Indigenous people in Canada, when it comes to pharmacare. While there will be challenges, these can and should be addressed, but Indigenous people need access to pharmacare now — more specifically, non-status First Nations and Métis individuals who are currently paying out of pocket, if they do not have private insurance. This bill represents a critical step toward achieving that goal.

I urge the Senate to make sure that we have that in mind as we move forward to ensure that we can all benefit from universal pharmacare. We must ensure that our diabetes medications are being administered correctly and are available to individuals so that, at the end of the day, we do not have comorbidities and other complications.

Meegwetch. Thank you.

The Deputy Chair: Thank you very much. We will now continue with Ms. Davis-Murdoch. I believe you’re sharing your time.

Sharon Davis-Murdoch, Co-President, Health Association of African Canadians: Good evening. Thank you to senators and staff for inviting us to present to you on behalf of the Health Association of African Canadians, also known as HAAC. I am a founding member of HAAC.

We were formed in 2000 to address African-Canadian health issues and the system inequities affecting health. Throughout these years, we have developed valuable connections with African Nova Scotian and Black community members across Nova Scotia. We are excited to connect community members and project partners to ensure that lived experience is at the forefront of this work.

Prompting the formation of HAAC was a project sponsored by the Dalhousie School of Nursing and the Atlantic Centre of Excellence for Women’s Health. The project focused on women’s health, but stakeholders quickly acknowledged that women’s health could not be examined in isolation. Thus, HAAC was formed with the understanding that women’s health was a subset of the entire family’s health.

Our vision is to create thriving, healthy African-Canadian communities in Nova Scotia, and its mission is to promote and improve the health of African Canadians in Nova Scotia through community engagement, education, policy recommendations, partnerships and research participation within a cultural competence framework.

HAAC identifies people of African ancestry among those facing disproportionate health disparities and inequities in all aspects of Canadian life. Consistent with the literature on the social and structural determinants of health, people of African ancestry face systemic, anti-Black racism; face disproportionate risks for certain diseases and disorders; suffer from higher rates of chronic disease; have reduced life expectancy; access care less frequently; and face inequities in the quality of care they receive.

HAAC’s mandate to support the improved health of African Canadians across our diversity includes having access to affordable prescription medications and related products.

The Deputy Chair: You have 30 seconds left.

Ms. Davis-Murdoch: HAAC’s cultural competence approach recognizes that one size will never fit all, so we hope that a universal, single-payer pharmacare plan will mean that African Canadians who are disproportionately affected by chronic disease will gain access regardless of income.

Lisa Dennis, Co-President Elect, Health Association of African Canadians: My name is Dr. Lisa Dennis, and I hold a clinical doctorate in rehabilitation. I’m talking on behalf of the 1.5 million Black Canadians, 13% of whom have diabetes, myself included. That makes 200,000 Black Canadians.

I want to talk about the reason why there is such a disparity in the Black community, and it comes down to three different types of trauma, which causes higher levels of cortisol.

Trauma number one would be the impact of intergenerational trauma that Black people carry, which is manifested in physical and mental health problems. Studies show that the stress hormone cortisol in a pregnant woman may be experienced in her unborn fetus as early as 17 weeks into gestation.

Trauma number two is adverse childhood experiences, which include physical, emotional or sexual abuse or neglect and household dysfunction, such as witnessing violence or substance use. This is before the age of 18. This study found that someone who goes through these experiences is more likely to have health issues later on in life, such as a stroke, obesity and diabetes, to name a few.

Trauma number three is the effect of anti-Black racism. I’m referring to the subtle, everyday occurrences of racism called microaggressions. When an attempt is made to hold someone accountable, it is met with, as Robin DiAngelo puts it, minimizing, silencing, dominating, invalidating, excluding, isolating, denigrating, interrogating, objectifying, exoticizing, diminishing, controlling and undermining. This leaves the Black person bewildered, invalidated and unheard. Racism is also shown to change brain circuitry due to the imbalance of the autonomic nervous system and an increase in blood pressure and cortisol stress levels, which increases the allostatic load on the wear and tear in the body. Black bodies never learn to relax or be able to repair as a result of the toxic stress, thereby weakening our immune system.

I admit that I have diabetes as well. If I were to pay out of pocket, it would cost me $536.10. This is not insulin. I’m on three different medications. This puts me, as well as other Black Canadians, in a position to prioritize maybe less food in the fridge, skimp on medication to stretch it out or delay paying a water or electricity bill.

What we need is culturally competent resources. HAAC, under my leadership and initiative, has developed unprecedented culturally competent resources around chronic disease in a video and a booklet entitled Black Lives Living Well. This is a resource that provides basic health information that meets the immediate needs for Black people to understand their A1C numbers, their blood pressure and their cholesterol levels, as well as offering wellness tips and culturally competent information to doctors so that they can understand how to better take care of us. We need to be able to disseminate this book across the country. We also need properly prescribed medications because 20% of us are not on the correct medications.

I thank you for your time listening to us. I want to end by saying that Black people are dying slow, quiet and painful deaths at alarming rates from preventable diseases, and we deserve to live long, healthy and prosperous lives because our Black lives matter.

The Deputy Chair: Thank you, Ms. Davis-Murdoch and Dr. Dennis, for your remarks.

Senators, you will have four minutes for your question, which includes the answer. If you want to direct it to a particular witness, please indicate that in your question.

Senator Osler: Thank you to the witnesses for being here today. My question is for Ms. Thériault. The Minister of Health has stated that Canadians would be able to use their private insurance plans to access the same diabetes drugs that Bill C-64 will cover, and the minister has also said that this bill will open up the choice about whether you want to use your existing insurance or whether you want to go with the universal, single‑payer system. There are two parts to the question.

Have you had any discussions with any of the relevant federal ministers or officials about whether First Nations and Inuit individuals who are covered under the federal Non-Insured Health Benefits program will have the same choice to use either the Non-Insured Health Benefits program or national pharmacare?

The second part of the question is this: Have you had any discussions with the relevant federal ministers or government officials regarding the concerns you’ve outlined in your written brief about maintaining existing coverage under the Non-Insured Health Benefits program, increasing coverage through Bill C-64 or modifying income testing requirements? Have you had any conversations?

Ms. Thériault: Yes, we have. I did meet with the Minister of Health back in May when this was being passed in the House of Commons. My concerns were voiced and heard, I think, in the room that day. We talk about using either the Non-Insured Health Benefits program or private coverage — or pharmacare or private coverage — and what that’s going to mean. The Non‑Insured Health Benefits program covers much more than what this formulary includes. It also covers travel. It covers so many things that are not going to be touched. It also violates other laws if you touch it. That’s not my main concern.

I assume that under the provincial jurisdiction, if the Non‑Insured Health Benefits program doesn’t cover it at 100%, which it would, then you would be covered there. The individual should not see that as being an administrative burden for them to have that choice. That was something that was voiced to the federal health minister in our meeting.

Following that, on the income-based testing, I made sure that one was very clear. If we do make bilateral agreements that then run through the existing pharmacare programs that exist in every provincial and territorial government — which would be the most logical approach to how this would roll out — then, yes, my main priority and our population’s main priority and concern is for those who do not file their taxes to still have an avenue to gain coverage. But that avenue is not simplistic, and it is already concerning for them to even voice that they haven’t filed their taxes.

For context, I am a Red River Métis woman. My dad is a Red River Métis man who has not filed his taxes for seven years. He would fall under this. It is a large amount of shame that he holds for not having done that. To need to admit to the federal or provincial government that he hasn’t done this, and then to have to do all these other steps to receive his medication, he’s probably going to turn a blind eye and try to find other ways of going about things.

Senator Pate: Thank you to our witnesses for appearing. My question is for both of your organizations. The work that you do respectively emphasizes the inequalities for Indigenous as well as for African-Canadian communities in terms of barriers to access for essential medicines, including as a result of cost.

I’d like you each to speak to two things, please. Do you see an urgent need to ensure free access to contraceptives and/or diabetes medications which Bill C-64 would provide? What are the next steps toward a universal, single-payer, public pharmacare system that you would like to see? What do you see as the day-to-day impact on people in need of medicines if there are further delays in providing this access?

Ms. Thériault: Thank you for the question. For the urgent next steps, I think it’s important to make sure that the framework covers the nuances that I mentioned in my testimony and that the federal health minister — in his bilateral agreements — is taking into account the systemic barriers that are harming access to individuals and Canadians at large.

On the day-to-day impact, I see the day to day and the impact of the Non-Insured Health Benefits program and how that cannot possibly be enough sometimes for coverage for diabetes. That means reusing test strips when you’re not supposed to because you have reached the maximum. The federal government said, “That’s all you deserve as an individual,” but who is to say that you can’t test your blood sugar before or after a meal and maybe a little bit after that? That’s one of the realities that I’ve seen.

I’ve also seen individuals making decisions about their health that negate what their provider has asked them to do because the coverage isn’t there. More specifically, it’s with some of the newer drugs coming up for diabetes care that are not considered under either the Non-Insured Health Benefits program or pharmacare, depending on where you are provincially or territorially. Every day, people are forced to either take their medication or feed their family, pay their bills or other kinds of priorities.

Those are things that we speak about often at our board table. My board includes people with lived experience, and they always make sure to make that known.

Ms. Davis-Murdoch: I want to make the point that all Black people living in Canada, and probably living anywhere, are burdened with poor health due to our history and lived experience. That’s a fact.

Many of us also live with inadequate income and access to needed medication, with a need for access to services, supplies and information, as Dr. Dennis has talked about, and also to make choices for better health and better outcomes.

We hope that a universal, single-payer pharmacare plan will mean that we have better access to needed prescription drugs or medications and that we can get them regardless of income.

We believe that the burden should not be on African Canadians to find dollars to pay for costly prescriptions or go without treatment. We shouldn’t have to pay up front but, rather, be able to improve our own health by accessing needed care and wellness supports.

We hope a national pharmacare program will be designed to facilitate health equity and to support us in not being the payers of first resort.

Ms. Dennis: I concur with everybody. There is definitely an urgent need for medications when Blacks are 2.1 times more likely to have diabetes than Whites. Not all of us have health insurance. I’m actually between jobs right now with no health insurance until I start my new job, and $536.10 is a lot of money.

One of the ways we’re able to get information about what is going on in our bodies is with a simple blood test. This is how we find out what our blood sugar numbers are. For Black people — I don’t know if you realize this — it’s hard for us to have blood tests taken because phlebotomists are not trained on how to find veins on Black skin. It causes us pain and discomfort — many multiple pricks just to get a blood test done. This could be easily solved with a vein finder: a $10,000 piece of equipment that should be at every blood collection site so that we’re not in pain. Also, just the thought of getting a needle to have blood drawn is scary for a lot of Blacks, which further increases the mistrust of the health care system because we’re not important enough for phlebotomists to be properly trained to find our veins on our skin. That gives us vital information about what is going on in our bodies, including our sugar levels.

That’s a day-to-day thing as well as having to figure out ways to stretch test strips, as was mentioned, or reusing lancets to check our blood. We find shortcuts. We have no other choice but to do that, and that’s unacceptable.

The Deputy Chair: We’d better move on. I think we’ll have time to come back because I only have two more people on the list. Senator Pate, we can come back. For anyone who is not a member of the committee and would like to ask a question, please feel free to put your name on the list.

I did not ever know that or think about finding the vein during a blood procedure, so thank you for that.

Senator Bernard: I can absolutely say that she’s absolutely correct. I don’t know if our witnesses were listening during the previous panel, but I disclosed there that I live with Type 2 diabetes, and I’ve also been a health advocate for far too many family members, so I’ve spent far too much time in emergency rooms. In those emergency rooms, I see far too many poor people, racialized people, Indigenous people and people with multiple issues. For many of them, their problems started with diabetes that was out of control and not diagnosed, largely because they weren’t getting preventive medicine.

I didn’t plan to lead with that, but your comment about finding the vein to take blood sent me down a different path.

Let me start over and say that I’m delighted to have the two of you here from HAAC. The work that you’re doing is so essential to bring awareness and more education to the community and changing policy. In the short 24 years that you’ve been in existence, you’ve done a lot.

I want to pick up on a comment that was made by one of the previous panellists talking about stigma. Could you speak to what you know in terms of the African-Canadian community? How does stigma impact people’s access to health and health care, particularly the stigma around contraception and especially when there’s pressure on women to take the lead on contraception? They’re not the only people responsible.

Could you speak about stigma and what you have learned in your work about stigma? How does it impact access not just to prescriptions but also to health care, which includes prescriptions?

Ms. Dennis: Thank you for the question, Senator Bernard. With regard to contraception, for starters, there is not much information on race. There is not much race-based data to give us the information that we need to find out what’s going on in the Black community. When it comes to contraception, it’s something that’s been weaponized against Black people and Indigenous people, either in the form of coercion or choosing certain types of contraceptive methods or forced sterilization, and this has further caused mistrust within the marginalized communities. We need to be able to collect some data on race that will lead to better health outcomes. That should be foundational to the work that we do.

Ms. Davis-Murdoch: I would say that certainly stigma is a fact in terms of even feeling comfortable in connecting with and approaching the health system. Whether you’re talking about issues related to chronic disease of any kind, or whether you’re talking about mental health and certainly mental health support, or whether you’re talking about sexuality, or if you’re talking about contraception as it relates to your lived experience, I think stigma is a problem.

This is the way that we see it at HAAC: It is more about the systemic problem than it is about a problem that we, as Black people, have. We need a system that is responsive to us. In fact, essential to this evening’s presentation, we wanted to make the point that we are in need of improved clinical cultural competence. This is essential for better diagnosis, improved treatment and competent medication therapy that meets our unique and pressing needs.

One size does not fit all. That has everything to do with service as well as medication and pharmacology policy.

Senator Moodie: I want to make a comment in response to Ms. Thériault’s comment. We do already have a two-tiered pharmacare system in this country — those who have access through their own financial ability and/or private insurance and those who do not.

The question I have is for the Health Association of African Canadians. In your comments, I would like us to focus, if we can, on what the impact of this bill would be on Black Canadians. Would you see an improvement in the coverage and access to drugs if there is a pharmacare bill that offers the slate of drugs that are currently on the list, and are there any concerns around access that this bill does not address for you?

Ms. Davis-Murdoch: I would say that certainly this is the beginning of what we would like to see. We would like to have universal pharmacare coverage for people based on the needs of our populations and the reality of our history and lived experience. We do not have equitable health care and health supports for our people regardless of where they live in the country and certainly regardless of their income. As we have said, we are disproportionately affected by ill health as a result of that history and lived experience. So we are all at risk, and we live with poorer health than other populations.

Having better access through a pharmacare plan that is universally available to us will certainly be a major factor in improving health outcomes.

Ms. Dennis: I would like to add to that. If all Black people are getting and taking the proper medication — because some of us are not getting the proper medication, and we’re not getting access to the newer ones — in terms of morbidity, we are having less issues with foot ulcerations, lower limb amputations, vision loss and diabetic retinopathy, as well as fewer hospitalizations, in-patient hospitalizations, physician costs and home care problems. There are same-day surgeries. Comorbidities are happening as a result of not being on the correct medication.

Senator Moodie: What I’m trying to get out of you is a straight answer. Is this going to improve the lot of Black people in Canada?

Ms. Dennis: It will 100% improve the lives of Black people.

Senator Burey: Thank you all for being here and for sharing your testimony, expertise and knowledge with us. I’m going to ask the question that Senator Senior asked during the previous panel regarding the next steps, should this legislation pass. What would your role be in explaining what it means to populations, and what resources might you need to do this? I think this is a very big piece of the rollout of a potential pharmacare bill.

Ms. Thériault: Thank you for the question. Our role in ensuring the next steps is very similar to the other groups that went before us. First of all, it is to educate. There have been a lot of questions: Do I use the Non-Insured Health Benefits program? Do I not? It’s that kind of thing. We want to eliminate that confusion; no one is trying to drop anything that they already have. We must ensure that people are well informed early on that the Non-Insured Health Benefits program is to stay and remain the same. There must be no confusion there for those who are covered under that.

For those who are not covered under that, there is education about what this could potentially mean for them — how they will access it, what it will look like and then the next steps in involvement.

Our organization is very interested in ensuring that the interests of non-status First Nations, status First Nations, Inuit and Métis are represented at the table and continue to be — because it’s not always the same lived experience; it might be very different for different individuals — while ensuring that we have the resources to sustain the fast-paced momentum of the bill and ensuring that we have the human capacity and the time to be able to dedicate to it. Thank you.

Ms. Dennis: In terms of supports we need, I definitely agree that we need culturally competent education. As I mentioned earlier, through my leadership, HAAC developed a Black Lives Living Well resource booklet which has a lot of information for Black Canadians about better ways to take care of their health. It also has a section that especially gives information from Black doctors to non-Black doctors who have information on particular drugs and medications that should be used for Blacks, as well as better ways to screen for certain chronic diseases.

I would love to see vein finders in every single blood collection site, because I’ve heard numerous stories, including myself, of getting poked and prodded just to get a blood test. This is absolutely unacceptable. When I had a visit, I had a White nurse who actually said, “I will pass you on to somebody else because I do not feel comfortable drawing blood on Black skin.” She thought she was doing me a favour because she didn’t want to hurt me, but what she communicated to me in that moment was that I am not worth the time for her to learn. This is unacceptable. Just getting a blood test is crucial to finding out what is going on in our bodies.

That’s just getting started, but that’s where I’ll end for right now.

Ms. Davis-Murdoch: For 24 years, the Health Association of African Canadians has been the place where people get information that is culturally specific within cultural competence, not a one-size-fits-all approach. We share it with the community. We share it with government. We share it with partners across the health system and the education system — across all systems. We delivered the first culturally specific Black health clinics with vaccines for COVID. We were the initiators of the primary health care models of the Nova Scotia Brotherhood Initiative and the Nova Scotia Sisterhood Initiative. We have continued to be the place where people get information, where policy is developed and where policy is articulated. We will step up yet again to be the people who will provide information in ways in which people will be able to accept it, understand it and participate more fully in the health system, which they well deserve in an equitable health system.

The Deputy Chair: Senator Bernard, did you have a follow‑up to this?

Senator Bernard: Yes.

The Deputy Chair: A short one, please. Go ahead.

Senator Bernard: I want to ask about the committee of experts. Would you see yourselves — both organizations — as potential members of the committee of experts that would be helping to advise on this legislation?

Ms. Davis-Murdoch: Absolutely we would.

Ms. Thériault: It wouldn’t be me personally. It would be someone appointed by our organization and entrusted to do so.

Ms. Davis-Murdoch: Yes, we would be available. We would make ourselves available. We would make others available. We have a robust membership of over 100 people, and we have a very strong board, all of whom would be in a position to sit in front and provide information and guidance to you as expert witnesses.

Ms. Dennis: The key phrase there is to provide guidance. It should not be put in the hands of Black people to solve this problem. We want the health care system to do a better job for us and by us. We are there to guide and give the expertise that we know. We expect that they would respect our lived experience and understand that what we’re talking about is an actual reality, and not try to minimize it in any way, shape or form.

Senator Osler: I’d like to ask Ms. Thériault a follow-up question because your answer to my previous question made me think of something.

My question is on the Bill C-64 means testing and the existing provincial and territorial public pharmacare programs. We are both from Manitoba where, in Manitoba, the current pharmacare program is income-based, which means a deductible is calculated based on the total adjusted family income. You mentioned that came up in your discussion with at least one of the federal ministers. That’s one of your concerns or recommendations: Income testing requirements should be modified.

I’m wondering if you can share with the committee how that discussion went with the federal minister or if you’ve had discussions with at least our provincial government.

Ms. Thériault: Thank you for the question. It’s a really good one. I just went through the process of applying for pharmacare to see what the base level would be, and it’s pretty hard to reach. It’s very interesting how you can really eliminate a portion of people who need medication by administering provincial programs or territorial programs that way.

The federal health minister did not respond back. I wasn’t really expecting a response, and I don’t think it’s his jurisdiction necessarily to enforce everything that provincial and territorial governments do. I think that would go into the Canada Health Act and something way more complicated than that. However, he might be able to negotiate those as conditions, like he mentioned in his testimony last week, when he is negotiating the bilateral agreements with the provincial and territorial governments. That is the window of opportunity that we believe could be a good place for that to come into effect. I think that’s really important.

In Manitoba specifically, we haven’t yet had that conversation with our Minister of Health directly. It’s something to come. I think our focus was a little bit on this federal legislation for now before we get to the other provincial and territorial governments that will follow up with this.

[Translation]

Senator Brazeau: Thank you all for being with us today. The question is for you, Ms. Thériault.

As mentioned earlier, the federal government has a fiduciary obligation towards First Nations and the Inuit in terms of uninsured health benefits. Personally, every time I hear a health minister say that uninsured health benefits will not be affected, I get a little skeptical. If we compare the list of drugs from 20 years ago with today’s list, for whatever reason, we can see that there have been big changes.

I’d like to know if your organization, the National Indigenous Diabetes Association, has identified any unintended consequences that could occur with respect to uninsured health services. We already know that there is discrimination when it comes to obtaining health care, as Joyce Echaquan has experienced. Now we’re talking about access to medication. If the bill passes, do you think Canada’s First Nations and the Inuit will benefit, and not have to pay the price for a jurisdictional headache between the provincial and federal governments?

Ms. Thériault: Thank you for your question. The first thing we see in terms of uninsured services is that it’s much more than simply all the drugs on the formulary. We hope, and I say hope because, as you said, the Minister of Health says he won’t remove any medications from this list, but he won’t guarantee it; no one is talking about a guarantee. We really want to keep the drugs where they are on the list.

It’s very important to understand that the uninsured list has no income testing. We don’t want to complicate many people’s lives again. Getting medications on the list covered can already be complex for someone living with diabetes and the health care provider. There are many forms and things to fill out. It would be great if you could simplify the process. We hope we don’t see any medications removed from the list. We will certainly be the first to tell the Minister of Health not to touch the list. Together, we can make a difference, but we’ll get nowhere if we all work in silos. That’s basically it.

Senator Brazeau: Thank you.

[English]

Senator Pate: Thank you very much. I wanted to provide an opportunity for both groups to further elaborate on what steps you would recommend that the government take during implementation of Bill C-64 to ensure that it’s effective in promoting health equity for the communities you work with and in order to deliver a step-by-step roadmap to a universal, single‑payer, public pharmacare that is articulated in the Hoskins report.

In particular, Ms. Thériault, if you could speak to how to best communicate — again, you’ve covered this a bit — with users of the current national Non-Insured Health Benefits program regarding the provisions in this bill as well.

Ms. Davis-Murdoch: I would say that you’re asking what next steps should be taken.

First of all, it would be to pass the bill and understand that it is the beginning of this process toward — we hope — a national pharmacare program that covers all needs, because diabetes is one chronic disease that disproportionately affects us; there are so many others. When I think about how affected we are by certain cancers — prostate cancer and very aggressive breast cancers in women — many needs are going unmet in terms of access to needed drugs.

The way to —

The Deputy Chair: You have about 10 seconds.

Ms. Davis-Murdoch: Work with us, work with communities and hear our voices.

The Deputy Chair: Thank you. How about Ms. Thériault?

Ms. Thériault: Thank you for the question.

During the negotiation process that the federal health minister will have with the provincial and territorial governments, one thing we truly believe in ensuring are those conditions of means‑based testing, which we talked about, and uncovering what that means for these areas. The provinces and territories, as well as the federal health minister, have a duty to engage with their Indigenous nations and people who live within their jurisdictions when it comes to the rollout of this bill.

Everyone in all provinces and territories will have different perspectives on what that will mean in different nations, and sovereign nations will have different positions on those. Those should be respected as they move forward in the next year.

We want to make sure that we continue to engage not only with community-based organizations but also people with lived experience who really bring to the forefront how this is going to affect them and how we can move forward in a good way —

The Deputy Chair: Sorry, I have to stop you. I’m looking at the clock. I apologize.

Ms. Thériault: It’s okay. That’s your job. Thank you.

Senator Cormier: I’ll be brief. This goes in the same direction, but it concerns the committee of experts. The mandate is to make recommendations respecting options for the operation and financing of national, universal, single-payer pharmacare.

Should you have one recommendation to send to that committee, what would it be?

Ms. Thériault: The recommendation is that those covered under the current Non-Insured Health Benefits program are not negatively affected. That should remain unchanged.

Ms. Davis-Murdoch: I would say that the health of African Canadians becomes a priority and gets on the radar with needed medications and with coverage for drugs and services as a matter of urgent action.

The Deputy Chair: Thank you. How about Dr. Dennis?

Ms. Dennis: Culturally competent care is what we require, and we needed it yesterday.

The Deputy Chair: Perfect.

This brings us to the end of this panel. I’d like to thank the witnesses today. This has been excellent testimony. We managed to squeeze a whole lot into a short period of time.

Senators, tomorrow, we will resume our study of Bill C-64 at 11:30 a.m.

(The committee adjourned.)