Meri-Margaret Deoudes: Thank you so much for having me. It's great to be here.
Ashish Kamat: Oh, it's lovely to have you, especially because there's a lot of science and a lot of data that's been presented here at GU ASCO in bladder cancer. Really exciting times for patients. But I think what's even more exciting and what's even more pressing is what BCAN has done with the fresh new voices of bladder cancer. And it was obviously embargoed until just yesterday, so everybody's eager to hear what you have to share.
Meri-Margaret Deoudes: Sure.
Ashish Kamat: So tell us. What's going on?
Meri-Margaret Deoudes: Yeah. So it is great to be here. And as we were just discussing, it's nice to hear some of the readouts. Some are great positives, some are not so great, but we're really understanding the science better and we're using that as an opportunity to move on. But stepping back from our 20th anniversary, we realized that it was a good opportunity to really look at holistically the patient journey from maybe symptoms or diagnosis all the way through survivorship. So that hadn't really been done in a very holistic way. We have great report outs from the clinical from in terms of survival rates and what's working, but we really didn't pay attention to what that patient experience was holistically like. And that's what we aim to do with the report.
Ashish Kamat: Yeah, and I think that holistic approach is really important because you hear from patients and you hear from their caregivers. Can you share with us some nuggets as to what is in the data that was collected and released?
Meri-Margaret Deoudes: Absolutely. So first, I'll say it was across the United States, 49 states, not with Wyoming and Puerto Rico, 1,100 patients, so it really gave us a good foothold in terms of geography and also across the spectrum of bladder cancer disease. And I think some of the learnings aren't necessarily surprising, but reaffirming to what we already know. So we know, for example, that it's very difficult for patients to navigate what comes next. The good news is there are more therapies. There are more choices than there were even five years ago. With that said, it's more complex environment. How does a patient understand what the right therapy is for them with so many more options is one big piece. What does that journey look like? The second part is, as you well know, what is the mental impact? The mental and emotional impact of having a cancer diagnosis altogether is difficult.
Certainly a bladder cancer diagnosis is difficult because of so many of the decisions, because of the surveillance can be quite difficult for some patients for follow-up and just even for diagnosis, as well as the financial toxicity of this disease in particular. It is one of the most expensive to treat, and that really has an impact on the overall health and wellbeing of not just the patient, but the family members or the care partners around that person. So we're really looking at what that effect is across the board.
Ashish Kamat: Yeah, and I think, like you said, the holistic approach is really important and getting insights into the key aspects that you mentioned. I think as a field, we've obviously for many years been tackling bladder cancer, urothelial carcinoma, from the viewpoint that nothing works and our poor patients are not making it. I still remember when I first started in bladder cancer, nobody wanted to do bladder cancer. People laughed at me, literally said, "All your patients are going to die," but that was the reason I wanted to do it.
Meri-Margaret Deoudes: Sure, yeah.
Ashish Kamat: But the field focused more on improving survival and sometimes we lost sight of the humanity behind the person with bladder cancer, he or she, what they're going through. And data such as this and efforts such as this lends a real human face, a real human voice to the real issues that people face. Like you said, financial toxicity, right?
Meri-Margaret Deoudes: Yes.
Ashish Kamat: Did anything in the results surprise you?
Meri-Margaret Deoudes: I think one of the big surprises was the split between men and women and diagnosis, as you well know. Many women are seen by their GP or by OB/GYN and they're treated for UTIs, multiple UTIs, to no avail. And it turns out that they actually have bladder cancer. They've delayed that treatment or that diagnosis because they were being treated for something else. And then once they get to the point where they're like, "Oh my gosh, I need to see a specialist. I need to see a urologist," it's a difficult situation because urology offices have been geared towards men. So because of the delay in the diagnosis, often they have more advanced disease and it's harder to treat. I think that was one big, big learning. I think the other learning is a disconnect between patients really wanting support for the mental health and wellness and the relationship they have with their provider to understand what those options are. Over 90% want to have that information, but only 40% feel that they've really been provided those resources.
And that may just be the communication or when they're first diagnosed, there's too much information for them to absorb, but I think it's a challenge for the provider community to understand and tell them it's going to be difficult, because we all know that it is, don't sugarcoat it, but also following up with maybe a little bit more probing questions outside of the questionnaire they might fill out in the waiting room. And understand, like you were alluding to earlier, what really gives them joy. Once they get through this process, what is it going to look like for them, which may in some cases change their treatment options. So being aware of not just treating the cancer, but treating the patient and what their outcomes really want to be in addition to the expertise that you all provide.
Ashish Kamat: I'm going to put you on the spot a little bit, ask you to dig deep and answer this question, because when we did the World Bladder Cancer Patient Coalition Survey, which was ex-US, it was more to address underserved countries. I'm from India, address those areas.
Meri-Margaret Deoudes: Sure, yeah.
Ashish Kamat: We found something very similar where patients wanted resources, but they didn't have access to it. It was a very small percentage. And at that time, we attributed it to the fact that in India or in Africa, there's not the resource. There's not the money. This is North America. Why do you think there's that lack of support? What's your best guess as to why that's happening?
Meri-Margaret Deoudes: I think a couple of reasons. As you know, it's an older population, traditionally a population of older White men. They're not used to or accustomed to getting this kind of support. So I think that's one barrier. They're not comfortable saying, "Hey, this is really difficult. I need some extra help." I think physicians take for granted that their patients understand that the diagnosis is difficult. It's a cancer diagnosis. And if the patient says, "Yeah, I'm okay," you're limited on time, you're like, "Okay, well, that seems fine and I'll keep moving." I think that's one big thing. We find that the relationship is really important too, as you well know. Taking the time, which I know is difficult, to really understand and build trust with that patient is hard in that certain period of time, and know it's okay for them to ask for those resources. And that's why I think we need to back up and start with, "We know this isn't the news you wanted to hear, but here's the diagnosis. We have a lot of therapies, which is the good news, but we also don't want to sugarcoat that it might be a difficult road and you might need help along the way. You're going to be anxious about your scans.
You're going to perhaps have side effects to some of the treatments. It's going to be a lot of change for your life today through the journey of treatment as well as beyond that, so let's get you some support along the way. And maybe you won't need it at the end of this road you're on now, but at least we can put that support in place." I think some of it is just giving the patient that space to accept that there are other resources for them.
Ashish Kamat: And speaking of resources, BCAN does a phenomenal job. Ever since, I've been involved since the beginning, it's just a place you can send patients. You can tell them, "Hey, there's a lot of junk on the internet. If you want to go to one reliable place, this is it. It's by patients for patients. It's vetted." And BCAN always doesn't just do something. It actually works for the betterment of the patient. So what do you have planned from this effort? What are some of the steps and projects and endeavors that BCAN is planning?
Meri-Margaret Deoudes: Yeah, it's a great question. So we are going to be expanding our education and support. We will be leaning into how do we provide better opportunities for our patients to advocate when they do have those visits for mental health resources, for example, helping them better navigate the financial pieces of that journey. So we're looking to, what kind of material could we improve there? What kind of resources could we lend? What kind of partnerships could we grow into that would help provide that support that they really need? I think another unmet area for us is helping them understand better, and we've been working on it, but it's, as you know, difficult, the clinical trial environment, what that means. And it starts from an education of helping them understand what that means to do a clinical trial. It doesn't necessarily mean it's your last resort. It also doesn't mean you're going to get a placebo.
We have some myths that we still need to work through, and I think BCAN can play a big role in helping with that. And then also, helping providers understand that when you're talking to a patient about clinical trials and all the implications of what needs to happen, you start talking about biomarkers and all these other alphabet soup things. It's like a different language to our patients. So I think we can do a better job in helping our patients understand what they need to ask and maybe you guys can help us and we can work together to help the patients have a better understanding of what that might look like from the get-go so there's not this confusion. I think those are a couple of big areas that we'll continue to work on.
Ashish Kamat: That's great. And like you said, it's part partnership. You can't do it without us and we can't do it without you. It's a true partnership, and an integral part of this whole partnership is the patient, which is ideal. That's how it works best together. Thank you so much for taking the time.
Meri-Margaret Deoudes: Yeah, sure.
Ashish Kamat: Really, congratulations on this effort. Really looking forward to seeing it. And I presume we'll be able to have a link at the end of this where patients can go and either reach out to BCAN's website or access the report.
Meri-Margaret Deoudes: Yeah. And we would hope that we'll have an executive summary, please share it. And also, the full report is quite lengthy, as you mentioned. There's a lot of information we can't cover here, but I think it will be really helpful for all of us as we build our new strategic plan and as we continue to partner with you all.
Ashish Kamat: Thank you so much.
Meri-Margaret Deoudes: Yeah, thank you.