The Current - Canadians with cancer spend out of pocket for some care

Episode Date: December 10, 2024

A cancer diagnosis isn’t only terrifying, it's also costly — a new study from the Canadian Cancer Society reveals that the average cancer patient will spend more than $30,000 out of pocket on their treatment. Matt Galloway speaks to one of the study’s authors, and a cancer survivor who had to decide between paying for medication and making rent.

In 2017, it felt like drugs were everywhere in the news, so I started a podcast called On Drugs. We covered a lot of ground over two seasons, but there are still so many more stories to tell. I'm Jeff Turner, and I'm back with Season 3 of On Drugs. And this time, it's going to get personal. I don't know who Sober Jeff is. I don't even know if I like that guy.

On Drugs is available now wherever you get your podcasts. This is a CBC Podcast. Hello, I'm Matt Galloway and this is The Current Podcast. The diagnosis of cancer is news no one wants to get. Despite years of research and progress in treatment and survival rates, cancer is still terrifying, painful, life-changing, and too often life-ending. It is also extremely expensive. A new report from the Canadian Cancer Society estimates the disease will cost the Canadian economy more than $37 billion this year, and close to 20% of that is borne by the patients

and caregivers themselves. Vanessa Percoco was diagnosed with colorectal cancer in 2022. She's in our Montreal studio. Vanessa, good morning. Hi, how are you? I'm okay. How are you doing? I'm good. I'm very good. I'm glad to hear that. This is, I mean, tell me what you're comfortable with because we're asking personal questions. So this is difficult, but take us back to when you first got sick. You were just 31, right?

I was 31, exactly. When did you know that something was wrong? So I had just, I started having like pain in my stomach. And I was just finished with my first year of university. I was studying to becoming a teacher. And they gave me a small contract, you know, to end the year. And then I had to rush to the hospital because I was in so much pain. And they gave me a small contract, you know, to end the year. And then I had to rush to the hospital because I was in so much pain.

And I spent about 11 days, you know, trying to find out what was wrong with me. We did some tests, some scans, blood work, and we couldn't find anything. So they had to open me up to find out not only that I had, um, cancer, colorectal cancer, but I had, um, it was pretty advanced and I woke up as well with a colostomy bag on my stomach. I can't imagine what that would have been like. Uh, it was, uh, I think I, you know, I think it was, there's no words to describe. It's very, you get emotional, you get people around you, your family, the reactions. I think I couldn't even realize what was going on at this point. If you don't mind me asking, what sort of treatment did you have to have?

I had to go through 12 chemo treatments every two weeks, but there was always something going on. I was getting sick. I was getting a lot of side effects, so I had to wait to get better to get treatment. Chemo made me really—I was sick, but it made me more sick because there's a lot of side effects to the chemo that you get in your body. What sort of, I mean, we have universal care in this country. The great advantage of that care is that when you leave the hospital, they don't present you with a bill. You don't have to give your credit card or what have you. But there were things that you did have to pay for out of pocket that you needed to take care of yourself. What did you have to pay for? I had to pay for the colostomy bags, which I didn't know what a bag was before having

one. And of course, they give you samples to try, but then everything is, you know, it's expensive. You have to buy the bag, the bandaid. You have to change it every four days, and that's, you know, it's not covered. And then once you're out of the hospital from I got three surgeries within like a year and a half, two years, every time you have to recover from those surgeries and the chemo and all that, you have to pay for, excuse me, you have to pay for, you know, how do you say it, drugs and, you know drugs at the drugstore. How much did you pay for those prescription drugs? It depends. I mean, I had to pay.

So my first surgery, when I got out, I needed a bunch of different drugs, and it came out to, let's say, $200. That was only for me to get better from that surgery, from that first surgery. And then I go to the store to get the colostomy bag. And again, that's another $400. So right there, you're not expecting to pay any of that stuff because in some ways I didn't decide. And I wasn't aware that I was going to have to go through all this.

And that's just some amounts. These are things that aren't covered by any insurance, but they're also not just covered through our own universal healthcare. No, it's not covered. You would think it would be covered, but

it's not. It's money you have to spend on trying new bags, what fits you well, what fits you correctly, because we all have different sizes and shapes. So it's really the first month, the first months you spend a lot on getting the right bag to fit you. And also you spend a lot on medication because you need to feel better. So a lot of medication doesn't work and works and you get allergic reactions. A lot of stuff happens, side effects for most of all. There's also things you have to pay for in terms of expenses. I mean, you're living your life still,

so you need to pay food, you need to pay rent. Anybody who goes to a hospital or to the doctor knows that parking is crazy expensive often in those institutions. You had to pay for that as well. Exactly. So parking, gas, and then you can't work, right? So you're always, I was going to the hospital several times a week and I had to stay sometimes to have my pick line change or have my bag, something was leaking, something was wrong. So a lot of the time I had to stay sometimes to have my pick line change or have, you know, my back, something was leaking, something was wrong. So a lot of the time I had to actually be in the hospital and spend money on all that stuff. How much time did you have to take off work? I had to be off work for at least two years until I felt better and good enough to go back. And was there any disability coverage to help

pay those bills while you were off work? I got 15 weeks of insurance of, you know, what they give you 15 weeks of from when you work. And then that's all I got. 15 weeks from starting from May when they discovered I had cancer. 15 weeks is what I got as for, um, to help me. And then I was on my own and I didn't have any other help, um, from, you know, I had help from my friends and family, of course, but, uh, no help from Quebec or Canada or whatever. Tell me about your family. I mean, I, your sister shut down her hair salon, right, to help you? Yes. Not only her, but a lot of my family had to stop working at some point

to take care of me because I was very sick. And they had to leave work and close their, my sister closed her hair salon to just stick around and cook for me and sometimes even like give me a bath because I was so sick and I was, you know, in a bad place. So a lot of my people, a lot of my people, friends, family, of course, more of my sisters and my mom had to leave work to be around me a lot and stick around because I couldn't take care of myself. Did you ever, I mean, again, this is hard, but did you ever, because it's so expensive and life continues on and you have to pay those bills, but the money's not coming in, did you ever have to

make compromises in the quality of care that you were getting because of the cost that you had to pay. I did. At some point, I was asking myself, let's say for medication. I needed a medication for chemo to help me feel better and not get so sick, right? Because you get really sick, again, like I said before. So at some point, I was like, should I get the medication or should I keep the money to pay my rent or my car? Because I didn't want to lose my name. I didn't want to lose. I was already losing all my sanity from having to go through all this. I was debating. I was anxious. I was nervous. I was stressing about money so much. and I had to depend on everyone because I also had to go through, you know,

physiotherapist, osteotherapist. I needed physical, I needed, you know, to see a therapist because when you go through this, it's really hard. People around you, your family are there, but you know, they're most, most of the time they're sad and they want to be there for you, but they're helpful, but you need to talk to someone. And you have to pay for that. All that's not covered. And nutrition is as well. You said that this isn't fair, which is in part why you've been talking about this, right? That it's not fair that you, I mean, as you're trying to get better, you have all these other things to deal with as well. I think it's unfair that we have to go through chemo

not knowing if we're going to make it right, if we're going to be able to live and we have to stress about money. Let's say I made it and I'm good now, but let's say I would have stressed about money and then worry about chemo and then be gone or, you know, passed away. The ending of my life would have been about stressing about money and making me feel better. I think sometimes if we could, you know, have something covered or in some way like a build-up program. I'm not saying to cover for everything, but at least be prepared because we're never prepared.

And I didn't have any money aside to pay for all that stuff. And I don't think I should be using the money that I, you know, in my savings to cover for my cancer charges or whatever needs to be done around that. And, I mean, you go into this and you have no idea what it's like to get sick, but you, did you have any idea that if you were ever to get sick, that you would also have to help, you know, carry some of the cost of that? No, not at all.

I was, no, I was very, I was very shocked, especially about paying the bags, which, you know, the colostomy bags cost a lot of money. And you need to find, I mean, you're wearing it. So it's not about being like a princess and saying, oh, I want to wear the nicest bag. It's not nice to wear. It's not fun to wear. It's very, actually, I was very embarrassed to even talk about it. So for me to talk about it and share it with everyone is a very big step. But at first, I really wanted to be comfortable.

So then you spend a lot of money on trying to find what fits you best. And then you have to change your clothes as well. So you spend money on new clothes and new outfits because you don't want the bag to be seen or shown. So it's expenses that you're not expecting. You leave the hospital and you don't know that you're going to have to go through this, especially if you're not being able to work because my oncologist didn't want me to go back to work. There was no way for me to be in presence of people that could give me diseases or whatever was going around. So I had to stay at home and just take care of myself.

How are you doing now? I'm so good. I'm adjusting still because I had to reverse. They reversed my colostomy bag and I still have to go through nutrition and take care of myself and be aware of eating well. And also, I still have scar tissue a lot because I had three big major surgeries. So I still have to do physio and osteo. So all of that is still expenses that I have to pay. But right now, I'm working, so I'm in a better place, right? I'm really glad to hear that, and I'm thankful that you would be

willing to talk about this. It's really important and a story that I think a lot of people perhaps aren't aware of unless they have gone through what you have gone through. Vanessa, thank you very much and take care of yourself. Thank you so much for having me. Vanessa Percoco was diagnosed with colorectal cancer in 2022. She was in our Montreal studio. In 2017, it felt like drugs were everywhere in the news. So I started a podcast called On Drugs. We covered a lot of ground over two seasons, but there are still so many more stories to tell. I'm Jeff Turner, and I'm back with season three of On Drugs. And this time, it's going to get personal. I don't know who Sober Jeff is. I don't even know if I like that guy. On Drugs is

available now wherever you get your podcasts. Ioana Nicolaou is co-chair of the Canadian Cancer Statistics and Advisory Committee. She is one of the study's co-authors. She's in our Calgary studio. Joanna, good morning to you. Good morning. How are you? I'm well. Does that sound like a familiar story? Yes, unfortunately it does. I think one of the things that's really shocking to people is that idea in this country that we have, I mean, it's part of our national identity. You have universal care. There are things that aren't covered, but the assumption is that if you get really sick,

you're not going to have to present the credit card. You're not going to have to pay out of pocket for certain things. How much are Canadians paying out of pocket, as we just heard from Vanessa, to deal with the costs associated with going through cancer treatment? Yeah, so in this report, what we found that was striking was that people with cancer and their caregivers have to shoulder $7.5 billion this year alone. And that's 20% of that entire cost of cancer that is the cost of society.

So that's a staggering amount. And not only that, a lot of that, about 50% of those costs, so 3.7 billion are actually out-of-pocket costs. So in the report, we included multiple costs to quantify the cost for people with cancer and their caregivers. and one of them was out-of-pocket. Like we heard things like take-home medications, travel, transportation, accommodation. And then the other costs that we included were lost opportunity costs. So that was time costs related to time spent receiving care, as well as lost income, as we heard for people that had to either leave their work altogether or pause and really spend that time to focus on their care and their recovery. How people understand why it is that Vanessa, for example, would be on the hook to pay for colostomy bags, would be on the hook to pay for medication that she needs to keep

her healthy and alive. Yeah, unfortunately, these out-of-pocket costs, these time costs, the lost income, especially the out-of-pocket costs, these costs are not covered by the healthcare systems. I mean, you could understand in some ways why things like parking, for example, may not be covered. But the bag is something that she needs because of the surgery that she's had. I think a lot of people, and she thought this, that that would just be covered. She would assume that that would be covered. Yeah, exactly.

It's very shocking. And in the report, we saw that these costs are average costs. And you can imagine that it's not the cost. The impact of the cost is not felt equally. And so you could really have a wide range depending on the individual and their cancer experience. And especially for people of lower income, people that live in rural and remote areas in Canada. These costs can really have a tremendous impact, and we know that financial burden can lead to worse health outcomes in some cases.

What more do we know about that? Again, Vanessa was talking about the stress that she had to deal with. She's trying to get better. She's dealing with this shocking diagnosis, but also then dealing with the first of its kind. And one of the reasons is that we collaborated with people who are affected by cancer and people with lived experience. And we incorporated their quotes and their experiences throughout the report to kind of help contextualize the data that we're seeing. And so you can see in the quotes in the report that people are having to choose whether to take the medication or to delay or forego the necessary

treatments because they just can't afford it. Do we know whether, again, our healthcare system, for all the flaws that it has, our healthcare system is something that we hold up and we will often compare ourselves as a nation to other countries in terms of their similar systems. How does Canada compare to other countries in terms of the amount of money that patients have to pay out of pocket when they're diagnosed with cancer? Well, that's something that's really hard to compare because, as you mentioned, Canada and every country has its own health system. And we really didn't compare in this report to other countries, partly because the methodology is so different. So we wanted to kind of give a universal sense of what the cost is in Canada and really how much of that is shouldered by people with cancer. What do we need to do about this?

I mean, again, people will be diagnosed with cancer today, and this is something that they'll be shocked by in terms of their diagnosis, but also in reading this report and hearing about it over the last couple of days, the cost that will be associated with that. So what do we have to change as a society to make sure that people are able to take care of themselves but also not have to deal with that financial stress? Yeah, that's an excellent question. I mean, cancer is a very complex disease and treatment is equally complex.

And so I think there's not one solution to help reduce the cost of cancer. I really do think that it takes all of us, it takes a society to try to come up with solutions to help lower cancer costs and support people going through this terrible experience. What specifically would you want to see? Knowing what you know, having collected this data from people who are going through this, what would you want, for example, government to do to be able to support people? I think we're hoping that this report

kind of stimulates conversation. As I mentioned, it is the first of its kind. And so we're really hoping that the numbers in this report are going to help decision makers and policymakers, and that this report really gets people talking about these costs. I mean, it really is an example of, we talk about the care economy, for example, and the people who are involved in the care economy. There's a professionalized side of that, but there is also the unpaid work that volunteers do, that family members do, and that really is highlighted here as well. Yeah, exactly. I mean, another striking finding

was that for the average person with cancer in Canada, cancer costs nearly $33,000 in their lifetime. I mean, that's a significant amount. That could mean a down payment. That can mean helping your children with the cost of university. And so included in this cost is the lost income that caregivers might have to let go of because they're taking time off to care for the individual. Ioana, thank you very much for this. Thank you. Ioana Nicolaou is co-chair of the Statistics Advisory Committee for the Canadian Cancer

Society. The financial burden of this, I think, is shocking to a lot of people, but not to people who have had cancer. How has cancer affected your family financially? Have you had to choose between cancer treatment and other necessary expenses? What do we do about this? You can let us know. Email us thecurrentatcbc.ca, part of a larger conversation, certainly,

around the healthcare system and what it does and doesn't cover here. For more CBC podcasts, go to cbc.ca slash podcasts.