Transcript of Canadian Perspectives on Bladder Cancer with Michelle Colero and Cassandra Schooley

February 1, 2023

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Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit B-C-A-N.O-R-G.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by, and about the bladder cancer community. I am also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 mono year neobladder, and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it BCAN, producers of this podcast.

This podcast is sponsored by the Seagen/Astellas alliance and Genentech. February 3rd marks the 23rd year of World Cancer Day. And so in honor of bladder cancer survivors, caregivers, and clinicians globally, I am pleased to welcome today’s guests from Bladder Cancer Canada. Michelle Colero, Bladder Cancer Canada’s executive director has over 20 years experience in the not-for-profit sector, having worked with local, national and international health, social services, and environmental charities. Michelle has extensive experience in strategic and operational planning, collaborating with multidisciplinary teams and various experts in the private and public sectors.

Our second guest, Cassandra Schooley, is Bladder Cancer Canada’s communications specialist with 10 years experience in marketing and communications. Her background includes agency experience, specifically in digital marketing and communications, supporting small and large scale organizations, as well as for-profit and nonprofit organizations. Michelle and Cassie, thanks for joining me on today’s podcast.

Michelle Colero:

Hi, thank you.

Cassandra Schooley:

Hi, thank you.

Rick Bangs:

So you both play very different roles at Bladder Cancer Canada, and so Michelle, let’s start with you. What do you do as the executive director and how did you get started at Bladder Cancer Canada?

Michelle Colero:

Sure, thank you, Rick. Actually, as you mentioned, I’ve been in the nonprofit sector for over 20 years. You can actually say it’s 35 years if you include 15 years in school volunteering. I’ve mostly been in the healthcare sector, though I did have a stint in San Francisco and South America for an international conservation organization.

As executive director at Bladder Cancer Canada for almost two years now, we are growing quickly. We started with a very thin and lean but not mean team of three of us, and now we’ve got five full-time and three part-time staff. What that has led to as executive director is actually ensuring that we meet the patient’s needs. We’re responsive and we’re able to be agile and flexible when needed. And we’ve actually been growing into new avenues and new partnerships, which has been very exciting for all of us. Also personally, I’m actually from an Italian immigrant family. My grandfather came from Italy and started his own dry cleaning business, and unfortunately he had bladder cancer and passed away. So in a sense, I feel like I’m coming full circle, starting off with someone with a personal experience and now working at Bladder Cancer.

Rick Bangs:

Wow, that’s great. And so how about you, Cassie? What does the communication specialist do and how did you end up at Bladder Cancer Canada?

Cassandra Schooley:

Thanks, Rick. As the communications specialist here at Bladder Cancer Canada, my goal is to promote the patient resources available to patients and to help put our name out there so that when patients and their families and caregivers are in need of support and resources, they know that we as an organization are here to help. And before joining the organization, I did work in digital marketing space, supporting businesses and improving their online visibility. And before that I worked for a local nonprofit, which I really enjoyed. So I really wanted to get back to the not-for-profit sector and provide support and experience that I’d learned in an agency setting and bring that to not-for-profits in need like BCC. And BCC is very much a grassroots organization, truly dedicated to supporting patients’ needs. So it’s really great to be a part of the team.

Rick Bangs:

Great. So Michelle, the partnership between BCAN and its Canadian counterpart, Bladder Cancer Canada has been strong from literally the very beginning, but not everybody would know that story. So could you start by telling us a little bit about the relationship that exists between these two organizations?

Michelle Colero:

Yes, sure, Rick. As you know, cancer knows no borders and bladder cancer has been existing in Canada just as it has in the US. But unfortunately there were no organization nor resources in Canada. So two gentlemen diagnosed with bladder cancer, Jack Moon and David Guttman, both living in Ontario, had both come across yet separately BCAN. And they thought, wow, this is an amazing organization, has peer support resources for us. It’s got support groups and all these resources. So in 2005, they both attended their first of many BCAN events. And they realized, oh my goodness, there is nothing up here in Canada. There’s nothing, and we need to try and fill a void.

Now, of course, you can’t just pop and start an organization. So David and Jack, what did they do? They met individual patients. Their own urologists were referring other bladder cancer patients to speak with them. And that’s how it started. Very grassroots. As Cassie said, we still remain that way today. And from there in 2009, they founded Bladder Cancer Canada. It’s a magical story, and David and Jack are both still very much involved. They still speak with patients and provide support to all of us, and we are ever so grateful of their visionary and strategic leadership.

Rick Bangs:

And as a reminder to our listeners, BCAN started in 2005, so they were in the ground floor. That’s awesome. So what’s your relationship with BCAN today? Do you interact frequently and what would the nature of those interactions be?

Michelle Colero:

Yes, we have an amazing, great relationship. I personally, and many of our patients attend the think tank and various patient education events, webinars. You guys have wonderful resources, and I have been lucky to have traveled with Andrea and Stephanie, and we have sat on other committees together. So we have a fantastic relationship. I kind of think of you as sort of our big brother and sister from which we can continue to learn from as well.

We also have referred many American patients to BCAN, and I know that BCAN has referred not just Canadians, but a number of Americans to us as well. There’s one example I always think of. There was a patient in the US who needed access to BCG treatment, but unfortunately BCG was not available in his area. And he didn’t live too far from the US Canadian border, so one of your amazing volunteers at BCAN contacted us. And through that connection, we were able to link him with the urologist in Windsor, and at the end of the day was able to take him on as a patient and he was able to receive his BCG treatment. And isn’t that what we want? We want to ensure that patients get the treatment they need, whether it’s north or south of the border.

Rick Bangs:

Right. And how about you, Cassie? Are there any examples of your relationship with BCAN?

Cassandra Schooley:

Yeah, absolutely. Part of our job is to create resources for patients, and BCAN has been wonderful at sharing their patient resources that we’ve been able to replicate for Canadian patients and adjust to represent Canadian medical care. There’s also a really great relationship between the Canadian medical community and the US. There’s a lot of information sharing through studies and research between the doctors. So this allows for minimal replication of efforts. And our Canadian urologists also frequently present to the BCAN events, and there seems to be a real partnership with both medical communities, which is wonderful.

Rick Bangs:

Yeah, it’s so collegial in bladder cancer, which is very different from some of the other spaces. So Cassie, I want to continue on this conversation about your terrific programs, and some of those programs might be interesting to our US listeners. So Michelle mentioned a specific example of an inquiry from a US citizen. What are the typical questions or requests that you might receive from the US and how do you handle them?

Cassandra Schooley:

Yeah, so as Michelle mentioned, we do often get frequent inquiries from US patients seeking information about BCG treatment. We do also get requests from US patients who are traveling to Canada. They want to know what their options are when they’re traveling, what happens when they have to call 911, what will the cost be if any emergency treatment is needed?

We do get inquiries from US patients who are working here in Canada. They also want to know what their options are while they’re here working and how to navigate the healthcare system. So I think patients, no matter where they’re located or what their diagnosis might be, they want to know what their options are and what resources and support they have access to. And as Michelle mentioned, I don’t think borders need to restrict that. I think the relationship with BCC and BCAN and some of the other international organizations is so strong, and I think collectively we can agree that the end goal is to provide support and resources to patients no matter where they might be.

Rick Bangs:

Great. Cassie, I think I can remember hearing a fairly interesting story about an awareness campaign for bladder cancer that was done in Canada, I think it was Toronto. So can you tell me the story behind that campaign?

Cassandra Schooley:

Yeah, absolutely. So our See Red, See Your Doctor awareness campaign has been a rather successful campaign for us in promoting the awareness of bladder cancer and the most common first symptom, which is blood in the urine. So we promote this across Canada through billboards, TV PSAs, transit shelters, digital posters. And in Toronto specifically at Yonge-Dundas Square, which I like to call our Canadian equivalent to Times Square.

Rick Bangs:

Okay. Yeah.

Cassandra Schooley:

So this campaign features imagery of lemons being squeezed, and instead of yellow lemon juice, the image of red blood emerging from these lemons. And the messaging that coincides with this campaign is your pee shouldn’t be red either. If you see red, see your doctor. Blood in the urine is the most common symptom of bladder cancer. So we have heard firsthand from patients that this campaign specifically prompted them to reach out to their doctor and advocate for themselves, which is wonderful to hear about a campaign like this. You want the effort to really make an impact. So we’re really pleased with the way this campaign has been going, but we also unfortunately received some negative feedback from this campaign, as blood in a PSA commercial can be sometimes alarming. Also, blood in the urine can mean many things aside from cancer. But our end goal realistically at the end of the day is just to ensure that patients aren’t ignoring this first symptom and that they’re getting it checked out in a timely manner.

Rick Bangs:

Yeah, because awareness is the key here.

Cassandra Schooley:

Absolutely.

Rick Bangs:

So in Canada, you have a very different healthcare system. Michelle, can you briefly describe for any US listeners how your healthcare system works in Canada?

Michelle Colero:

Oh, yes. Good thing you said briefly, Rick, because my goodness, it could take time to discuss it.

Rick Bangs:

I’m sure.

Michelle Colero:

So we have a public healthcare system here, which means that 80% of all of our costs are covered by the government, and 20% is private insurance or out-of-pocket. So what happens is the federal government, in addition to drug and food approvals, they make fiscal transfers to each province and territory in the country. And those provinces and territories have exclusive jurisdiction for the direct delivery of most medical services. You often hear people say, “Oh, Canadians have free healthcare,” but we actually don’t. Canadians pay for their healthcare through their taxes. So in essence, Canada has a national health insurance program and physicians receive payments on a negotiated fee for service basis from the federal government, as do hospitals receiving transfers to ensure that they too are able to be in operation.

Rick Bangs:

So that’s somewhat similar to our Medicare system where people are paying in and getting services. So in the US, Covid and George Floyd’s death amplified concerns that have existed for years around disparities, but specifically concerns in the healthcare space. So even with your national healthcare system, I’m guessing that there’s still maybe some disparities. So could you talk about the healthcare disparities that Canada faces, Michelle, and how those disparities may be different from what we would experience here in the US?

Michelle Colero:

So as you just mentioned, and I mentioned earlier, healthcare is the publicly funded, but privately delivered service. So it’s free at the point of use, but delivered by private providers, which means they’re not always in sync and they’re very decentralized, and that usually leads to longer wait times for specialists.

Also, Canadian doctors negotiate their fees with the federal government every so many years, and there’s a fee structure. Sometimes more credentials lead to hire costs too, but like hockey players, as we say, there are caps. In essence, doctors get paid more in the US, often you see it in the news that we lose more and more doctors every year because we can’t compete with the salaries. It’s the same situation with the nurses.

There’s also significant inequalities within the system, indigenous communities, rural and remote communities. There’s a terrible doctor shortage across the country as well, especially in small communities and rural communities. We don’t have as many big centers like you do. And Nova Scotia, which is one of our provinces about the size and population of Maine, the whole province is without family physicians. I can’t even say it without stumbling a bit. It’s unbelievable.

Rick Bangs:

Wow.

Michelle Colero:

So Canadians cover everyone with health insurance, but then again they limit the cost by limiting the number of specialists leading to longer wait times. And so whereas in the US the wait time will be shorter, but more often than not the patient typically pays more.

Rick Bangs:

Wow, that’s fascinating. Now, Cassie, what about trends in bladder cancer? Are there any differences there?

Cassandra Schooley:

Yeah, absolutely. In Canada, unfortunately, we’re hearing a lot of young women particularly who live healthy and active lifestyles who would have had no exposure to environmental factors, and they’re being diagnosed under the age of 40. It’s a common theme here, unfortunately. And the Queen’s Cancer Research Institute specifically is conducting a study on the differences between men and women, and why women are now being diagnosed at a faster rate than men. At one time, the difference between men and women being diagnosed would’ve been 70% to 30, and now it’s kind of leaning towards 60% men and 40% women, and it’s slowly shifting to 50/50. So that’s a common trend we’re seeing here.

Rick Bangs:

Are there any other similarities or differences?

Cassandra Schooley:

Yeah, I think on that note, in Canada we’re seeing a lot of younger patients being diagnosed in their twenties and thirties. So years ago, the average age of diagnosis would’ve been around 65. And today, like I said, it’s closer to twenties and thirties, which is quite surprising. Again, the Queen’s Cancer Research Institute is doing a similar study to look into why we’re seeing so many patients being diagnosed at a much younger age now. We have a patient spokesperson who was diagnosed at only six months old, which is incredibly alarming. That’s a situation where risk factors like smoking and then environmental factors probably weren’t applicable. So today he’s an active teenager, which is wonderful, but it’s still an unfortunate circumstance.

Rick Bangs:

Wow, wow. So Michelle, as a bladder cancer patient, would I notice any differences in the treatment options that would be available to me?

Michelle Colero:

Not many treatment variations per se, though we do have higher prevalence of bladder preservation in Canada. So although complete removal of the bladder for muscle invasive has been the standard of care for decades, it’s now more widely acceptable and accepted that bladder preservation is a safe alternative for selected patients. And our bladder preserving approach is a combination of three treatments. It’s TMT is what it’s referred to, trimodal therapy, which is a combination of radiation therapy, chemotherapy, and a complete turbot. There’s also many more immunotherapy options today than there were even a few years ago, as we’ve been actively participating in advocating for patient and physician involvement in the approval of new treatment alternatives with the federal government. As I mentioned, they’re the ones that approve drug access and treatment access.

And in my short time with BCC, we’ve already had four successful new treatment applications passed thanks to the support of our patients and physicians. Then of course there’s BCG, which I have to mention was discovered by a Canadian doctor, Dr. Al Morales.

Rick Bangs:

Oh, let’s see. Was it really?

Michelle Colero:

Yes, it was. Yes.

Rick Bangs:

Wow, that’s awesome. All right, so let’s talk about BCG, because there is a global shortage, but my understanding is that the US and Canada have somewhat different solutions. So can you talk about the Canadian situation and the Canadian solution?

Michelle Colero:

Of course, yes. BCG is one of my favorite topics, and one question we get answered a few times a day.

Rick Bangs:

Yeah, I’m sure.

Michelle Colero:

Technically in Canada there’s no longer a shortage here. In addition to the existing Tice strain, we have a new Russian strain available in Canada called Verity-BCG. So though it’s not yet approved for CIS, cancer in situ, it’s approved and used widely in Canada now. So while there’s really two big differences between the two strains, while Tice requires mixing the vials with saline, this new strain, Russian strain, requires a ventilation hood during the reconstitution, making it a little bit more difficult for smaller and community hospitals to adopt it because you’re adding three minutes is what they say to the process, and the cost of a ventilation hood is usually prohibitive in many of those small community hospitals.

Also, the other difference too, is the efficacy between the two strains has not yet been determined. So though there was the [inaudible 00:20:05] strain for many moons ago that actually had the most efficacy to date, we’re not really sure what, if any, additional efficacy will come from Verity-BCG.

Rick Bangs:

So is anybody studying those differences? Because in the US we’re testing the Japanese strain of BCG. Is there anybody testing the efficacy of the Russian strain versus the Tice strain, which is available in both our countries?

Michelle Colero:

Yes, yes. We do have a team at Health Canada, I won’t even bother with the acronym list that we have here, as I’m sure you do there. But yes, there’s a program through Health Canada that actually determines the clinical trials required on the efficacy, and we’ve got some of the leading minds, including Dr. Morales himself, that have been looking into what the efficacy is between the two strains.

Now, it will take some time for those clinical trials to first of all be determined, and then to of course be proceeding forward, and then it could take up to eight or 10 years to even determine what the true efficacy is.

Rick Bangs:

Yeah. So you just mentioned that specific or those specific clinical trials. Are there any differences in clinical trials for bladder cancer in the US versus Canada?

Michelle Colero:

Yeah, the BCG trial I was referring to actually, just because there’s two, in essence, competitors, Tice and Verity, it’s becoming a little bit more challenging to ensure the availability, as you know, of Tice for those clinical trials. But in essence, Canada, we capture about 4% of global clinical trials. We’re the fourth in the number of clinical trials sites, and we’re a leader in the clinical trial productivity, which are the number of trials per population.

Rick Bangs:

Wow.

Michelle Colero:

The Canadian government also has been investing heavily in clinical trial support for at least the last 15 years. And just, gosh, not that long ago, in 2021, it was announced that they’re investing another 250 million over three years in clinical trial support. And really the most notable differences are really the access to clinical trials. So here often the patient has to find out about the clinical trial and bring it to the attention of their doctor. And the other difference is that participants are often not compensated for their time on the trial. And we currently are recruiting patients for four different studies right now, and only one is offering compensation, and it works out on an hourly basis to be below minimum wage.

Rick Bangs:

Right. Yeah. I think in the US, the pharma trials would be the ones that would compensate the patients. In closing, Michelle, the bladder cancer community welcomed a brand new global partnership called the World Bladder Cancer Patient Coalition, and I think that was back in January of 2019. So what is it and who, in addition to BCAN and Bladder Cancer Canada, participates?

Michelle Colero:

Yes. Oh, I love this initiative. So both of our organizations and Fight Bladder Cancer in the UK were the founding members of the World Bladder Cancer Patient Coalition, which is a mouthful, so we call it World Bladder for short. And we have three goals in mind. We foster an international community of people affected by bladder cancer, we advocate for access to the best possible bladder cancer information support and care, and we build alliances with health professionals, policy makers, academics, researchers, and industry.

In Canada and the US, we are very lucky to have communities of patients, volunteers, medical professionals. But in other countries like Africa, there’s no such group to turn to if you’ve been diagnosed with bladder cancer. No support programs, no resources. So these three organizations, founding organizations said, “You know what? We need to identify key areas of interest and needs, and let’s see where we can pool our resources to help.” And today, now World Bladder includes European Bladder Cancer Coalition, Action Bladder Cancer UK, Cancer [French 00:24:36] France, [Italian 00:24:38], which is in Italy, the Bladder Cancer Australia Charity Foundation, Bladder Cancer Awareness Australia, Bladder Cancer Norway, and the Norwegian Bladder Cancer Organization, which I can’t really say in English, so I’m putting it in English. Campaigning for Cancer, which is out of South Africa, and the Swedish Bladder Cancer Society, which I also cannot pronounce in English, so it’s the Swedish Bladder Cancer Society.

Rick Bangs:

Wow. And there’s been a lot of growth in the countries that are represented. It’s just so wonderful to hear as a bladder cancer survivor. So Michelle and Cassie, I really want to thank you for reminding us that bladder cancer is a global disease that has global support and resources, and about the strong partnership between BCAN and Bladder Cancer Canada. In case people would like to get in touch with you, could you share your email address andt website?

Cassandra Schooley:

Absolutely. Please visit our website, bladdercancercanada.org, or they can reach out by email at info@bladdercancercanada.org.

Rick Bangs:

Okay, great. Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1888 901-2226. That’s all the time we have today. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Michelle and Cassie.

Michelle Colero:

Thank you.

Cassandra Schooley:

Thank you.

Speaker 1:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network or BCAN. BCAN works to increase public awareness about bladder cancer, advanced bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit bcan.org.