Health Committee on March 7th, 2023

[Adam van Koeverden, Liberal, Milton, ON]

Thanks, Dr. McLaughlin.

Yes, CORD's an awesome organization. We should maybe consider adding it to the list of witnesses.

You mentioned the cost of drugs for rare diseases. I think your average Canadian feels that pharmaceutical companies.... They sense this degree of uncompassionate profiteering when it comes to the lives of kids. Do you have any insight into how or why these drugs, which are so critical in...?

I think of a couple of kids in my riding. Statistically, there shouldn't be more than one, but there's more than one case of spinal muscular atrophy in Milton. The cost for those drugs was completely inaccessible. It was more than any family could afford, virtually. In working through the rigamarole.... I forget the name of the drug, because I'm thinking of the cystic fibrosis one, Trikafta.

[Dr. Tom McLaughlin]

It's nusinersen, or Spinraza.

[Adam van Koeverden, Liberal, Milton, ON]

It's Spinraza. Thank you.

Do you have any insight as to how these drugs get so completely unaffordable? What role can the government play in levelling that playing field or making them a bit more accessible?

[The Chair, Liberal, Sean Casey]

Answer as succinctly as you can, Dr. McLaughlin. We're out of time here.

[Dr. Tom McLaughlin]

Of course.

Any profit-making company's motivation is to make profit. That's a good thing. That's how society has become wealthy and developed innovation. It's on us, as a society and as governments in particular, to balance that with appropriate regulation and controls on those prices.

I think it is a very important government role to be involved in how much drugs cost and what their prices are.

[The Chair, Liberal, Sean Casey]

Well done. Thank you.

Mr. Thériault, you have the floor for six minutes.

[Luc Thériault, Bloc, Montcalm, QC]

Thank you, Mr. Chair.

First off, I think it's exciting to hear from witnesses who are making very meaningful contributions to our study. We could talk for an hour with you alone, Mr. McLaughlin.

Dr. Lynk, you presented 10 ideas or solutions to improve children's health, without regard to jurisdiction. I understand all that.

You talked about breakfasts earlier. You know very well that that's a universal practice across Quebec.

What do you mean when you say we shouldn't worry about jurisdictions because you're just throwing some ideas out? However, after you do that, we have to work it out between the various levels of government.

Are we hampering children's health with our federal health care system, with Canada's federal and political setup?

[Dr. Andrew Lynk]

Thank you very much.

It's a very good question.

One of the most startling examples of where children fall through the cracks would be in our indigenous children when they need special services, and who pays for it.

There was something a few years back, as people will recall, called “Jordan's principle”, whereby the children would get the services and we could fight over whether the feds or the provinces paid for it first, but there was a lot of red tape. One child by the name of Jordan passed away prematurely because there were jurisdictional battles over who was going to pay for his complex care. That stuff can't happen anymore. We need to sort out things like that.

Clearly, the provinces have a lot to do with social and health well-being. They run schools. They run hospitals and clinics. They run roads. They do a lot of environmental things. My point was on what is clearly in the federal wheelhouse, and that's why I've listed these 10 different ideas. If I were a member of Parliament, that's what I would focus on. If I were a member of the Nova Scotia legislative assembly, I might focus on some different areas within the provincial jurisdiction.

It's to keep our focus on things federally, to share best practices and best evidence from across the globe so that Canada is the best place to raise a child. That's why I was finishing on highlighting the need for a national child and youth commission or commissioner, in concert with our indigenous leaders as well, to keep a focus.

As you know, there are so many things you have to deal with as MPs, and so many national issues of importance, but I just don't want this to get lost. That's where that national commissioner or commission could help keep us focused on this important issue and share best practices from different provinces and jurisdictions.

[Luc Thériault, Bloc, Montcalm, QC]

Some of the programs you brought up already exist in Quebec. Therefore, some solutions are already in place.

Basically, you're saying that practitioners must be able to share their best practices and that the federal government facilitates the sharing of best practices. I guess that's what you mean. In Quebec, we already have the equivalent of a child and youth commissioner.

It's all well and good to say that 25% should be invested in young people's mental health. However, by the same token, when you look at what the government recently put on the table, which is totally inadequate, how can we accomplish all that?

Everyone who comes to see us here wants to tie investments to their area of expertise. How do we mediate that?

[Dr. Andrew Lynk]

It's an excellent question.

One of the things we need to do a better job of is measuring outcomes. There's a lot of data across the country on wait times for adults waiting to receive knee, hip and cataract surgeries. There's very little on children. We're starting to establish some wait times for surgery, for example, but how well do we focus on outcomes in terms of resilience, well-being and access to services for children across the country? Again, that's where a national commissioner can collate that data.

If Quebec, for example, or P.E.I., is doing really well in one area, why is that? Why are your obesity rates lower? Why are your diabetic complications lower? Why are your surgical wait times for children lower? Why are children doing better in school in your particular area? There are all sorts of things to share, but I don't think we have one area and one group that's bringing all of this together to help you folks—who are going to design policy, legislation and budgets—to really make informed decisions, especially with competing priorities, with an aging population and with all sorts of external threats to Canada and other things. That's why I'm—

[Luc Thériault, Bloc, Montcalm, QC]

I'd like to ask you one last question.

Do you feel that the federal government is investing enough in pediatric care and research? Don't you think it has a lot of catching up to do?

[Dr. Andrew Lynk]

Yes, I agree with that. Dr. Verchere may also want to jump in on that.

In my faculty here at the department of pediatrics in Halifax, we have about a 12% success rate when we're applying for research funding, and I can tell you that maybe that's getting the crème de la crème, but there are probably another 20% or 30% of people who aren't getting funded—and who have excellent ideas and things that will make a difference in people's lives—because there's not enough money. There's a cut-off line. I realize that in life there have to be cut-off lines, but is a 12% acceptance rate good enough? I don't think so. I think we could invest better in that as well, and that's an important investment for the future.

[The Chair, Liberal, Sean Casey]

Thank you Dr. Lynk and Mr. Thériault.

Mr. Davies, you have six minutes.

[Don Davies, NDP, Vancouver Kingsway, BC]

Thank you, Mr. Chair, and thank you to all the witnesses for being here today. I'm particularly pleased to see two from British Columbia.

Dr. McLaughlin, I would like to start with you.

Are Canadian children facing socio-economic barriers in accessing affordable medications?

[Dr. Tom McLaughlin]

Yes, definitely.

Medication access varies immensely between provinces and jurisdictions. This is particularly important for families living in poverty. Depending on what province you live in, you might have almost all of your children's drug costs covered, or you might have to pay out of pocket, even if you are below the poverty line.

[Don Davies, NDP, Vancouver Kingsway, BC]

Do you see actual cases in your practice where kids show up and can't afford medication or are maybe even in hospital because they haven't had access to medication?

[Dr. Tom McLaughlin]

Yes. I work on an in-patient ward, predominantly. It's not an entirely infrequent situation. In hospital, all drugs are paid for by the hospital, so patients are not bearing costs. We will prescribe a medicine for when the child goes home, and then an hour or a day later, the ward will get a call back when the parent is surprised to see what it costs. They'll sometimes say that they can't afford it and that they need a different medication.

That really does happen.

[Don Davies, NDP, Vancouver Kingsway, BC]

Thank you. I'm going to come back to you.

Dr. Verchere, I want to ask you the same question. Do you see any socio-economic disparities for.... I was going to say in insulin uptake, but I will expand that to glucose monitors, test strips, syringes and pumps.

Is there restricted access to those, dependent on income disparities in Canada, in your experience?

[Dr. Bruce Verchere]

The answer to that is yes, Mr. Davies.

That's left to the provinces. Insulin is largely covered, but devices.... If you're looking at a pump or continuous glucose monitor, that can be $7,000 to $8,000 out of pocket—it depends on the province that you're in for the coverage—and then it's a few hundred dollars per month.

Of course, that means that access to these devices.... We know they have an impact on health because they improve control; they relieve the stress of the disease, and they reduce complications because the glucose control is better. Because not everyone can afford that out-of-pocket cost, there's definitely a socio-economic disparity in the access to that.

[Don Davies, NDP, Vancouver Kingsway, BC]

Thank you.

Dr. McLaughlin, in 2020 you co-authored a position statement for the Canadian Paediatric Society, entitled “Pharmacare in Canada: The Paediatric Perspective”. You included a recommendation that I'm going to quote: “Federal, provincial and territorial governments should develop and implement pharmacare plans that mandate universal, comprehensive, portable prescription drug coverage for children and youth.”

The health committee in 2017 and the Hoskins advisory committee appointed by Prime Minister Trudeau in 2019 both recommended exactly that, via a single-payer system. In other words, it was to expand the basket of covered services in our single-payer system to include essential prescription medicines.

Do you agree with that recommendation?

[Dr. Tom McLaughlin]

A single-payer system would certainly be the simplest way to have the federal government serve the same coordinating role as it does in other areas of health care. That would still mean that provinces have jurisdictions and are responsible for the delivery of health care, including prescription drugs.

There are other options. We have a patchwork system; we can have more patches. That would probably marginally improve the situation. In Quebec, there's been mandatory insurance, which is subsidized.

There are different ways of getting there, but I think we should and probably do all agree that children should be able to get the drugs they need and not have to face cost barriers.

[Don Davies, NDP, Vancouver Kingsway, BC]

Dr. Verchere, I want to ask you about the connection between healthy diet, sugar consumption and other things.

I understand that it's probably more of a type 2 diabetes question, but there are currently legislation proposals before Parliament to restrict the marketing of poor nutritional items to children—sugary beverages, etc. There's a proposal that both the Liberals and the NDP ran on in the last election, which would devote a billion dollars over four and five years to establishing a school nutrition program.

I'm wondering if you could give us your position on the connection between nutrition and the development of diabetes.

[Dr. Bruce Verchere]

You're correct in that type 1 diabetes has a different etiology, but certainly, in terms of type 2 diabetes, diet is an important contributor. There are genetic and environmental components to type 2 diabetes in both a sedentary lifestyle and an unhealthy diet, which contribute to obesity and the risk of type 2 diabetes. It is increasing in prevalence in kids, particularly in certain ethnic groups and, certainly, in indigenous persons.

I think measures that would lead to healthier food intake, food choices and food security could have an impact on the incidence. I should point out that many kids who are obese but haven't perhaps developed full type 2 diabetes are at very high risk for developing type 2 diabetes early in their adult life. The potential impact of that in children is really important.

[Don Davies, NDP, Vancouver Kingsway, BC]

Dr. McLaughlin, we also have the shortage of pediatric pain medication that occurred this fall. This committee heard evidence that there are literally hundreds of drugs that achieve shortage capacity every year, so we have a problem with drug shortages in this country.

Specifically, what steps do you recommend the federal government take to help address shortages of pediatric medication?

[Dr. Tom McLaughlin]

In particular, with many of the pediatric medications we're talking about, we're talking about shortages of child-friendly liquid formulations. There's actually lots of Tylenol out there; it's just that it's tablets. It's hard, when you're a parent at 2 a.m., to be responsible for the last step in the manufacturing process, which has errors and dangers.

It again goes back to the regulatory issues that I talk about to support and incentivize manufacturers to have child-friendly formulations available in Canada, and there are a number of steps to get there.