Evidence of meeting #18 for Health in the 43rd Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was patients.
A recording is available from Parliament.
6 p.m.
Conservative
Robert Gordon Kitchen Conservative Souris—Moose Mountain, SK
That's great. Thank you very much.
Dr. Wong-Rieger, I realize that you cover a whole bunch of rare diseases. I'm going to focus on just one and ask for your comments, particularly on cystic fibrosis and the medication Trikafta.
On the issues with the PMPRB, how do you see that impacting our CF patients?
6:05 p.m.
President and Chief Executive Officer, Canadian Organization for Rare Disorders
Certainly cystic fibrosis has been front and centre in the effort to try to get access to Trikafta, which has been considered the A+ therapy for patients with cystic fibrosis. Unfortunately, because of the PMPRB, the company has been very clear that it cannot bring it into Canada at this time. The impact on our pricing would be such that it would not only not be affordable for us, but it could also damage us further.
I think that has created a huge problem. They're not the only patient-to-organization, not the only disease, that's impacted in that way, but they've definitely been able to raise public awareness, and the fact that a young woman died in Nova Scotia.... Again, we have no clear evidence that she would have been saved by Trikafta, but she was definitely of the patient profile that would have benefited from it.
The other thing that happened, of course, is we didn't get the clinical trials in Canada. Again, early on there was the recognition that this was not going to be a country where we were going to bring this in early. Unfortunately, because of the way the system is set up, if you've got the patient on the clinical trial, you can't just drop them. I think companies are unwilling to risk the fact that they may have to keep a patient forever, or for many years, and this is reverberating through many of our rare diseases, including cystic fibrosis.
6:05 p.m.
Conservative
Robert Gordon Kitchen Conservative Souris—Moose Mountain, SK
Thank you very much.
Mr. Webber, let's move over to you.
6:05 p.m.
Conservative
Len Webber Conservative Calgary Confederation, AB
Thank you very much, Dr. Kitchen.
Very quickly—10 seconds—Dr. Wouters, you alluded to organ transplants very briefly. Are you seeing people dying because they're unable to get organ transplants because these have been postponed? I would think people are dying because of that.
Do you have any comment on that?
6:05 p.m.
Representative and Executive Vice-President for Science and Research at the University Health Network, HealthCareCAN
It's having a consequence, like all the consequences of stopping elective activity. We have a very large lung transplant program that has essentially been put on hold. Lots of people are waiting for lungs; lots of people are on those waiting lists, and with every day that goes by, there's a risk to everyone who's there and waiting for those.
It's a secondary consequence of COVID; it's not limited to transplantations, but they are definitely part of that collateral damage.
6:05 p.m.
Liberal
May 6th, 2020 / 6:05 p.m.
Liberal
Mike Kelloway Liberal Cape Breton—Canso, NS
Thanks, Mr. Chair, and hello, colleagues.
Thank you to the witnesses for some great testimony today.
It's a real privilege to be here to listen to a lot of the recommendations from the witnesses today and the past witnesses via Zoom. We've heard, over the course of the last six or seven weeks, that research matters and health investment matters. MP Jaczek talked about the theme of a stronger role for the federal government, and that's coming from the witnesses. Even among us as parliamentarians, hearing from many that investing in health care is essential is just great to hear.
My questions will be focused on the cancer society. This one is close to my heart.
My mom has had stage four cancer for six years, and she was a former volunteer for the Canadian Cancer Society. I know vividly how the disease affects individuals, especially during this pandemic, in the impact it can have on a compromised immune system. It's a double anxiety.
Can you tell the committee what kind of COVID supports you're offering to Canadians and their families impacted by cancer? You talked a little about it, but I think it's important to talk about some of the specific things you're doing right now with respect to those families and those individuals impacted by cancer, as it relates to COVID-19.
6:05 p.m.
Chief Executive Officer, Canadian Cancer Society
I'm really sorry to hear about your mother. It's lovely that she was a volunteer with us. We have 100,000 people a year volunteering with the Canadian Cancer Society; it's an amazing grassroots network of people who all care about cancer and who do a lot to support each other and all the million-plus Canadians living with cancer.
Because we've had to switch away from some of our offline supports that we typically give, we've augmented the online support during the pandemic. Our cancer helpline is probably the simplest way for people to access support, and our online community called cancerconnection.ca has so many amazing conversations happening among cancer patients themselves and their caregivers—people who are going through things right now who are giving each other tips and support.
As some of the other organizations have mentioned, we've also created things like webinars with specific information about what COVID means if you have cancer, how to navigate the health care system, how to understand the impact on you and how to protect yourself from the virus.
We've created all of these added services specifically during the pandemic, giving people more facts and a helping hand, and we're seeing a lot of uptake.
6:10 p.m.
Liberal
Mike Kelloway Liberal Cape Breton—Canso, NS
Absolutely, and I'll preface my comments by saying that my mother is actually doing very well. Even with stage four cancer, she can outwork me on any given day.
While my next question is also for the cancer society, it's also open to anybody who would like to answer it. As part of the provinces' and territories' response to COVID, many hospitals obviously had to cancel or postpone non-essential surgeries. How does this impact Canadians with cancer or heart disease, whatever the case may be? I'm looking for priorities and recommendations for hospitals that are now resuming these cancelled procedures. What would you recommend as a priority for hospitals as they gear up to take on those non-essential surgeries?
6:10 p.m.
Chief Executive Officer, Canadian Cancer Society
I think opening up the levels of care as quickly as possible is what's going to help our cancer patient community most of all. As for the decisions that are being made about how to prioritize, I will leave them in the hands of the health care leaders to do that well and to follow some of the guidance that has been created by organizations like the Canadian Partnership Against Cancer and the surgical oncology associations that have provided more prioritization guidance.
I just want mention that the thing that really helps people in the long term is research, so while we have these immediate needs that people face, there is also the larger question of research and what's happening with it, which we've talked about today. Here, I just want to say that, as a funder of research, the request for the wage subsidy program to cover researchers is very important because we see the investment that we make in research and the donations that people have given to us that go towards research. Maintaining those research teams is vital to that long-term outcome.
We've also been part of the more than 40 organizations who've been calling on the government to please consider opening up the wage subsidy program to cover hospital-based researchers. We see it as essential for that long-term health outcome for Canadians.
6:10 p.m.
President and Chief Executive Officer, Canadian Organization for Rare Disorders
If I could just jump in here, I think it's such an important question, but also one that, for the rare diseases community, has become disproportionately difficult. I mention this because you get treatment guidelines for the more major diseases, but at the same time, for instance, we will have a patient who has been waiting for a kidney transplant, but who gets put aside because he's not in the same category as other transplant patients. We have another patient who's waiting for a micro-radiation therapy. Again, it took a lot of advocacy to get her in in the same way as a patient with another cancer has.
We have recommended that there be a parallel task force that would be made up of experts but also include, from our point of view, many of our specialists who are able to put the patients into a proper triage. As we anticipate another wave, I think we really want to do the things you're recommending.
How do we set up the ability to handle these other patients so that we don't end up with a backlog? Our fear is about what happens a lot of times, that the more common and better-known conditions always end up getting prioritized because people don't know the others and don't recognize the risks of those others, so we need to have a task force that can put all of that into perspective.
6:10 p.m.
Representative, Canadian Lung Association and Professor of Medicine, Division of Pulmonary Medicine, University of Alberta
If I can jump in on this, I think one thing this committee needs to know is that, as we start to loosen up the criteria and start to go into elective surgeries, we've got to be prepared, because COVID is not going anywhere. Let's not fool anybody: We need to be prepared with testing and contact tracing, because if the load starts to increase and we start seeing signals of increased hospitalizations and increasing numbers, we're going to set ourselves back significantly, and all the things we've talked about today are going to be set back even further.
I think we want the testing and contact tracing, and every province needs to be prepared for that and do it in the right way to prevent this from recurring.
6:10 p.m.
Liberal
Mike Kelloway Liberal Cape Breton—Canso, NS
It's a marathon, not a sprint; that's for sure.
Thanks for the answers, folks. I appreciate it.
6:15 p.m.
Liberal
The Chair Liberal Ron McKinnon
Thank you, everyone. We go now to Mr. Thériault.
Mr. Thériault, please go ahead for two minutes and a half.
6:15 p.m.
Bloc
Luc Thériault Bloc Montcalm, QC
Thank you, Mr. Chair.
My question is for the representatives from the Canadian Cancer Society, Ms. Masotti and Ms. Seale.
In recommendation 6 in your brief, you call on the federal government to show more leadership and address the inequalities in funding for take-home cancer drugs.
Could you elaborate on that?
6:15 p.m.
Chief Executive Officer, Canadian Cancer Society
Yes, thank you.
I think I'll ask Kelly to speak to this one.
6:15 p.m.
Kelly Masotti Director, Public Issues, Canadian Cancer Society
Hopefully my audio will work this time.
We face inequity across the country in how cancer patients have access to their cancer drugs. We know that patients today want to be in their homes. We hear this over and over again. Take-home cancer drugs—and I here I would love the physicians to jump in on this—are available to patients across the country to pick up at their pharmacy and take at home, specifically oral chemo cancer medication.
We don't see this adequately addressed across the country. For example, in some provinces, if you pick up your medication at the pharmacy and take it at home, that is covered. In the province of Ontario, for example, if you are taking your oral chemo in the hospital, it's covered, but if you go to the pharmacy and pick it up yourself, it's not. Again, it speaks to that financial burden on cancer patients.
We see a role for the federal government to work with the provinces across our country to address this issue of take-home cancer drugs. We don't want cancer patients to have to pay out of pocket, but want this to be covered equally across the country so that all Canadians have access to take-home oral cancer medication without having to pay out of pocket for it.
6:15 p.m.
Bloc
6:15 p.m.
Chief Executive Officer, Canadian Cancer Society
I think anything that we can do that keeps people out of hospitals is beneficial at this time. We've certainly seen that people have self-selected to stay away from hospitals. Given the strain on hospitals, more at-home support and more virtual support make sense.