Transcript of What World Cancer Day Means to the Bladder Cancer Community with Alex Filicevas

February 2, 2022

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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 bcan.org.

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 model 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 Merck, Bristol Myers Squibb and Genentech. In today’s special world cancer day episode Beacon’s director of communications and marketing Mark story has a conversation with the executive director of the World Bladder Cancer Patient Coalition, Alex Filicevas. Mark and Alex talk about why bladder cancer is a global issue and how his organization is working to help patients all over the world.

Mark Story:

Hi, it is my pleasure today to welcome to our podcast, Alex Filicevas, who is the executive director of the World Bladder Cancer Patient Coalition. Welcome Alex.

Alex Filicevas:

Hi Mark. It’s great to be here. Thank you for the invitation.

Mark Story:

Sure. Do you want to maybe just let our listeners know very quickly what the World Bladder Cancer Patient coalition is all about?

Alex Filicevas:

Absolutely. So the World Bladder Cancer Patient Coalition is an international umbrella cancer patient organization, which was established in 2019. And by umbrella, I mean we unite bladder cancer patient groups who actually work and support bladder cancer patients on the ground at national level. And we bring them together at a global level to discuss challenges and opportunities as well for collaboration internationally. And BCAN is actually one of our founding members who was there from the very beginning. And it has played such a big role on making World Bladder Cancer Patient Coalition become a reality. And our work is really focused on three streams. It’s about building communities.

Alex Filicevas:

So as I said, really bringing people together from different countries where there are existing bladder cancer patient groups, but also supporting the establishment of new ones and guiding them on that journey. Raising awareness is another area where we focusing a lot of our efforts as well, around bladder cancer awareness month in May and engaging in advocacy as well. So working together with different stakeholders, policy makers, industry research, you name it. We try to build those relationships and advance bladder cancer patient voice around the world.

Mark Story:

Wonderful. The way that you are using the words global kind of got me thinking. So is bladder cancer a global problem? And if so, why in your mind is it a global issue and why is there a need for a global organization?

Alex Filicevas:

Absolutely. And you know, today we’re speaking on the occasion of the World Cancer Day as well, which is a global effort and an important one to bring that conversation around challenges that cancer patients face. And it is an opportunity for us to also do so about bladder cancer, which is often not talked about enough. And as you rightly said, it is a global disease. It’s the 10th most commonly diagnosed cancer in the world. And we have over 500,000 people who are diagnosed with bladder cancer each year. So it’s a huge number of people who need proper care, high quality care, support and information. And WHO reports as well, that over 1.7 million people are currently living with the disease as well.

Alex Filicevas:

So the numbers are really huge and we believe that it’s not being talked about enough to elevate that conversation, to raise awareness about signs and symptoms to look out for when we want to make sure that the patients receive their early diagnosis as possible. And then have the support and best care available to them throughout the whole journey. And one of the biggest roles in achieving that from our community is having those strong bladder cancer patient groups on the ground, like BCAN, who can do that within those countries. The patients can turn to them for information and peer support and also advocate on their behalf to make it a better reality for those that come after them.

Mark Story:

Okay. Did world bladder cancer fit an unmet need given the global issue, because it’s a relatively new organization. Obviously someone saw a need for this. Was there an unmet need before 2019?

Alex Filicevas:

Absolutely. And it was in the works for, I say about five years or so. And BCAN was one of the founding organizations, as I mentioned, a small group of people, a lot of cancer patient, advocates from different countries, US, Canada, UK, and some other countries as well, who saw that and met need primarily at the lack of peer support on the ground to really have a place to turn to for that information. And many of the organizations themselves at national level within their countries were born out of that need for information and lack thereof to guide them through that experience with bladder cancer. So this was one of the biggest drivers for the establishment of the World Bladder Cancer Patient Coalition. And that is one of the biggest drivers that we have now to support the establishment of these bladder cancer patient groups on the ground.

Alex Filicevas:

Whatever form shape they take, they might be small, they might be large and national, but they are there to provide information, to provide support and advocate on patient’s behalf to advance bladder cancer patient care within those kind countries. And I would like to mention as well as we’re talking about the World Cancer Day today, the big part of the campaign this year, the theme is Close The Care Gap. And I think this is where again, we see the role for everyone, including for World Bladder Cancer Patient Coalition at international level, to take that role in close the care gap in quality bladder cancer care. So everyone around the world has that access, as I’ve mentioned, superior support, treatment and care, no matter where they live in the world. Because that should not be a deciding factor.

Mark Story:

Great. Given that we have a mainly US listenership, could you give the listeners a sense of how the work that you do air could maybe have an impact on them ? an impact on people in the United States?

Alex Filicevas:

Sure. So I think I would like to mention that our vision as an organization is the world without bladder cancer. And that is a journey that we look at long term and we know it’s a very big challenge. But we’re focusing on bringing the communities together internationally and sharing that knowledge and experiences to make sure that we can learn from each other and advance bladder cancer patient care, or research and information. And through raising awareness as well at international level, we bladder cancer patients can have better experiences and outcomes around the world really. So I would include that. US is included in this. And by focusing also on giving bladder cancer patients and caregivers, a voice for change in a way, we’ve recently had a global bladder cancer patient survey, which has now closed. But it will be bringing that perspectives, including patients from the United States, how they’re experiencing their care and how we can work together to do better, to create better care experiences for these patients.

Alex Filicevas:

And as a global organization, we’re connecting the groups together. We’re working with our industry partners, pharmaceutical companies, medical and research communities, and bringing all these kind of players together, the key stakeholders to ensure that bladder cancer patients have a voice in shaping research, shaping treatment and also care delivery and bringing that in into the future. And so this has an impact internationally, but also it will have an impact at national level in the country, such as the United States. So I think every little part that both, I think that BCAN does as an organization impacts other countries through our coalition absolutely. And I think the same way, what we work together at international level can have a very positive impact long term on people affected with bladder cancer in the United States as well.

Mark Story:

Well, thank you. Thank you very much. And you’ve been generous with your time today, and I really appreciate you helping to lend a global perspective on what is a global public health issue in my mind. If people are interested in learning more about the world bladder cancer patient coalition, where can they go for more information?

Alex Filicevas:

So we do have a dedicated website market that we’ve been working on for a couple of years and trying to create a global hub for people affected by bladder cancer, especially on underserved countries and where there is lack of information about bladder cancer. So we do have a website that they can turn to at worldbladdercancer.org. So pretty simple. And it is available now in English and Spanish. So we’re trying to expand accessibility and I would invite as well, your audiences who are based in the US, maybe they do have family members or friends in other countries who may be affected by bladder cancer. Well they can visit our website and get in touch as well. There is a number of resources and information we have as well in various languages. And we’re working to expand on that. And of course, across the social media, you can get in touch with us but you can find all the details on our website.

Mark Story:

Wonderful. Well, thank you very much for your time, Alex. It’s been a pleasure to have you on Bladder Cancer Matters.

Alex Filicevas:

Thank you so much, Mark. It’s been a great pleasure. Thank you.

Rick Bangs:

That’s all the time we have today. I’d like to thank Alex, Filicevas for a great interview. Thank you for listening and we’ll be back soon with another interesting episode of Bladder Cancer Matters.

Voice over:

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. For more information about this podcast and additional information about bladder cancer, please visit bcan.org.