Transcript: The Bladder Cancer Room Where it Happens with Dr. Elizabeth Plimack

March 31, 2021

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’m 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.

I’m excited to have Dr. Elizabeth Plimack, professor in the Department of Hematology/Oncology, and chief of the division of Genitourinary Medical Oncology at Fox Chase Cancer Center in Philadelphia.

Her research looks at identifying biomarkers in neoadjuvant cisplatin-based chemotherapy in bladder cancer, as well as developmental therapeutics and immunotherapy in genitourinary malignancies. Dr. Plimack is also the brand new chair of the Bladder Cancer Advocacy Network’s Scientific Advisory Board.

In today’s podcast, we are going to talk about the scientific partnership between BCAN and the medical community. From the beginning, BCAN has followed the science and built an exceptional partnership with the medical community. Today, we will get an inside view of that partnership.

Dr. Plimack, I’m so pleased to have you here today because you have such deep experience with BCAN and other advocacy groups, and can, I think, help our listeners understand the importance of and results from these partnerships.

Dr. Elizabeth Plimack:    

Rick, thank you so much for having me.

Rick Bangs:                        

I want to start by getting some context about your relationship with BCAN. When did you first learn about BCAN?

Dr. Elizabeth Plimack:    

So, I remember almost to the moment when I first learned about BCAN. I was chatting with Ashish Kamat at a ASCO GU. I had just left MD Anderson where Ashish is to start my faculty position here at Fox Chase. He told me about this core organization called BCAN. I immediately said, “How can I be a part of this?” He said, “I’ll try to get you invited.” That was right before the meeting in Traverse City. I did not make the cut for that invitation, but he promised to get me invited the following year. I actually remember where I was when I got the invitation on my phone and being so excited to finally be able to join this incredible community. That was, I want to say, Rick, 11 years ago now that I first joined a Think Tank meeting.

Rick Bangs:                        

I think that’s right, because Traverse City was my first Think Tank.

Dr. Elizabeth Plimack:    

Right.

Rick Bangs:                        

All right. So, you’ve played an incredible number of roles within BCAN, and obviously congratulations on being named the chair of the Scientific Advisory Board. So, could you share what some of these roles have been and what the goals and outcomes have been from a patient perspective?

Dr. Elizabeth Plimack:    

Sure. I think the very first role I played was just an attendee at the Think Tank. I was riveted by the discussions. I was a little star struck at all of the sort of powerhouse of bladder cancer thought leaders that were in the same room. As you know, Rick, but maybe our listeners don’t, the Think Tank is unlike other meetings in part because it’s very relaxed and casual. Instead of wearing, suits, ties, dresses, and heels, we’re in our leisure wear, really connecting around the ideas associated with bladder cancer. Also, what struck me as an attendee, is the involvement of patients and patient advocates and survivors. At the dinner before every Think Tank, someone living with or surviving bladder cancer tells their story and it’s incredibly impactful. So to me, I was hooked, right, that connection between the thought leaders, the science, having junior faculty like me invited to attend and contribute, and then pulling in patients and patient advocates was just sort of a special mix that even to date, honestly, I’ve not seen quite as in depth in any other setting in cancer research.

I can talk about some of my other roles. I guess this could be a long topic because as soon as I was hooked as an attendee, I immediately started to volunteer for other things. Some of the things I’ve done that have been really rewarding with BCAN, one is being on the Think Tank steering committee and being chair of the meeting for one of the years. Another really rewarding role I’ve played, is being a grant reviewer and sharing some of the grant committees like the young investigator awards, where you really get to see, rising stars in the field, present their science. I think it’s through that, that I first met some of the people who are now big names in bladder cancer when they applied for their first grant through the BCAN way mechanism. Now, as the chair of the Scientific Advisory Board, I’m extremely excited to sort of work to shape the vision of the scientific mission of BCAN going forward.

Rick Bangs:                        

So can you talk about some of the most impactful things that have happened on either the research scientific side or the patient side?

Dr. Elizabeth Plimack:    

I think that’s actually a really easy question for me to answer, but it might not be what you expect me to say. I think where BCAN has had the most impact is in creating a collaborative community. I think that’s something we pay lip service to and speak to and aspire to sort of in every corner of cancer research, but with BCAN, because the Think Tank is such an open space where we bring voices from junior faculty, senior faculty, patients, multiple other facets of the bladder cancer community caregivers, it has this openness and this sort of shared sense of purpose that is so upfront in everything we do.

I like to tell Diane Zipursky Quale, who started BCAN, I think in her kitchen, many years ago, that it’s really almost her sort of culture that she’s put out there that has formed the bedrock of not just BCAN as an organization, but the entire field of bladder cancer and bladder cancer research. I think that’s where the biggest impact has been. I think that has allowed for scientific collaborations. It has allowed for grant funding to go to truly impactful research with folks who are already established in bladder cancer, but also people new to the field. I think that the most impact is culture. That culture was set by BCAN from the earliest Think Tanks.

Rick Bangs:                        

Yeah. I remember providing a tribute to Diane at the, I can’t remember 15, 15 years? 10 years? And saying that she had created the room where it happens, coming from Hamilton. So I mean, that room didn’t exist before 2005, when she sat at her kitchen table with her husband started the work here.

Dr. Elizabeth Plimack:    

Yeah, I mean, she was the genesis of it and she has maintained it and we still have that room, Rick, right? We see each other every year in that room together, and that has persisted, despite incredible growth in our ranks and incredible growth and advancement in the field diversity that has sort of entered our BCAN community in terms of voices and perspectives. But there’s still that, room where we’re all in it together that I think is really special and why I’m glad they let me in the club all those years ago. It’s been great.

Rick Bangs:                        

Let’s talk about that room. So, you mentioned this and definitely one of the core values of BCAN has been engagement and collaboration. So, how does beacon engage the medical community? Can you give some examples of how that’s been done?

Dr. Elizabeth Plimack:    

Absolutely. So, there are many examples, but I’ll pick up one that BCAN sponsored this project called the UC Genome. That brought together investigators. It brought together industry. It brought in patients where we made a tissue database of bladder cancer tissue with sequencing data and clinical data, that is a resource now to build upon within the field. It’s one that’s democratically available to anyone in our community who wants to do research. It’s one that was contributed to by industry, by scientists, and by patients who allowed their tissue to be donated to this cause. And.

I think that’s just one example of bringing in all these different facets towards a shared goal, that really only BCAN can do. All of us at our own institutions can develop tissue banks, et cetera, but we’re limited when we come together in this way, with the funding that was provided by BCAN, the engagement from the sequencing industry partners, again, patients and the scientific community, we can just sort of elevate it to the next level in terms of depth, and in terms of access for everybody. That’s just one example. I think there are many more where, where BCAN has evolved. We can go talk at length about patient engagement, and patient communication, and our ability to help our patients understand decision-making in the context of their diagnosis, where BCAN provides, resources that are accessible to them. I think that’s been incredibly impactful as well. We refer all of our patients to BCAN resources in one way or another.

Voice over:                        

The Bladder Cancer Advocacy network BCAN, invites you to join us for our 10th annual Virtual Walk to End Bladder Cancer, Saturday, May 1st, 2021 at 11:00 AM Eastern Time. Our virtual walk is an interactive nationwide alternative to in-person walk events that involve thousands of participants walking from the place of their choosing. The overarching walk theme is no one walks alone. As we make people aware that they are not walking alone during their difficult bladder cancer journey, an important reminder during this time of social distancing. Critical funds raised through the virtual walk, help BCAN increase awareness about one of the most commonly diagnosed cancers in the U.S., support hundreds of thousands of people living with this disease, and raise funds for much needed bladder cancer research. The virtual walk will be broadcast on BCAN social media channels, and we’ll include compelling videos from bladder cancer patients, caregivers, doctors, and more. Learn more about the May 1st virtual walk to end bladder cancer at BCANwalk.org that’s B C A N walk dot O R G, or contact us at (301) 215-9099.

Rick Bangs:                        

So, I’m wondering if you could talk about the reverse where the medical communities reaching out to BCAN, and there are a couple of examples that I can think of. One would be the BCG shortage, another would be in the context of COVID and dealing with COVID, but could you kind of elaborate on that? Because you’ve got that insider view and it’d be interesting, I think, for our listeners.

Dr. Elizabeth Plimack:    

Absolutely. I want to jump on that example you gave of the BCG shortage. So, that is an issue that is political. It involves industry communication and collaboration. It is extremely impactful to patients and a source of major friction and discontent among us as, as clinicians, knowing there’s a treatment that our patients should have not being able to get it for these various reasons. I think, pulling the voices together to negotiate around this, to discuss this, gives a very powerful, sets a very powerful table, that industry has no choice but to come engage with and sit at. They do. They need to hear this from us. They need to know what the issue is. I think it has been effective, right? Just writing letters or being frustrated or trying to hoard BCG within our various institutions is not the answer. It’s more coming together around the table to negotiate a solution. That’s a great example where we have, as a medical community, have really been able to use the power of aggregation that BCAN has to make change.

Rick Bangs:                        

Can you help me understand why this two way street of engagement is so important and maybe part of the answer is of why is it’s also so rare?

Dr. Elizabeth Plimack:    

That’s a great question. I think it’s so rare because academic medicine is still generally rewarded for individual achievement. That’s changing, but that’s the world we sit in. Industry has generally been rewarded by sort of stock value and again, generating the most revenue for their product. When we sit with those, whereas, and then the patients are there, of course we all want to help the patients, but I think when we don’t know what’s important to them and their voices are brought to the table, we’re missing that piece as well. So, it’s not just two-way, it’s multi-way, right? It’s industry, it’s individual researchers. It’s basic science with clinicians. Urology, with medical oncology and radiation oncology patients, caregivers, survivors, patients, who’ve lost loved ones to bladder cancer, right? All of these different perspectives come together and are important. It’s rare because we’re used to living in our own worlds and engaging around what we’re told are our priorities individually.

But again, I think this room where it happens has brought about this collective vision that is beautiful and unfortunately rare. Fortunate for us, who are part of BCAN, it’s our room. So, we do get to take it to the next level with engagement and collaboration.

Rick Bangs:                        

Yeah. I think your point about it’s more than two-way is so important because sometimes we forget as patients that this is about not just patients, and partners, and caregivers, and so forth and advocacy groups and people who are clinicians who are actually working with patients, but there are other entities involved like the government, like payers, and the insurance companies. Convening that group, who has the power to convene that group? It’s advocacy.

Dr. Elizabeth Plimack:    

Yeah. It’s Diane. No, it’s beyond Diane now, but I think, her engagement and her personality and her bedrock value of collaboration and of making sure voices are heard, has really resonated throughout the BCAN community. I give her credit for setting that tone that has caught on.

Rick Bangs:                        

She’s made it part of our DNA. Okay. So, over the years as a medical oncologist, you’ve seen some significant advances in how we treat bladder cancer and we’re really pleased that that’s the case. What role do you think patient advocacy organizations like BCAN have in advancing both the science and the patient support and education about cancer?

Dr. Elizabeth Plimack:    

That’s a great question. I’m so glad you asked me that. I think many roles, but I’ll give you two really concrete examples where BCAN serve as the glue that really held together the plan that elevated these advances. One is, there was a meeting at the NCI about end points for trials, for muscle invasive bladder cancer. There were, that was another room where a lot of really good ideas were laid out. Presentations were made and BCAN advocates were there. I think you were probably there, Rick, and Diane was there and they said, this is what’s important to patients, right? These end points aren’t important. This one would be important. So, with that input, and they’re respected, right? We know you. We’re friends with you. We’ve had dinner with you. We’ve known Diane for years.

We have this mutual respect and admiration for each other where we really hear each other when we talk, and when we make points, and when we discuss things. So, it led to a really nice paper that kind of outlined where the bar should be and, has been for these trials. I think that was something that was really impactful. Then I think BCAN also has raised a lot of money for bladder cancer research. It is the place for philanthropy, if you want to support bladder cancer research. The funds have been spent incredibly wisely through RF request for proposals, for grants. We have the innovation award, we have young investigator awards. We have travel grants for fellows. I think the framework around which the philanthropic funds are invested directly into research has borne fruit. We have the proof of that is the success of the careers of the people whose projects were funded by this.

Also, a lot of the projects that wouldn’t have been done around quality of life or other things that wouldn’t have found funding other ways where BCAN can creatively support those. Lots of different ways. Those are just a couple of examples.

Rick Bangs:                        

I’m curious because you’d have a good perspective on this. So over time, it seems likely to me that if I had been looking for a career in cancer research back in the 2000s, early 2000s, bladder cancer might not have been an area that I would want to focus on. I’m assuming, and then be interested in your perspective on this, I’m assuming that that may have changed. That it’s actually because of some of these things that have been nurtured by BCAN and the other stakeholders, this might be a preferred career path for folks, but am I wrong?

Dr. Elizabeth Plimack:    

You’re right. I think that’s a couple of things. I think back in the 2000s, no disrespect to the folks who were doing bladder cancer research during the 80s and 90s, but trials were negative and that was just sort of accepted. There was this rhetoric that bladder cancer patients are difficult to treat. Trials will be negative. Patients won’t enroll. We’ve been there before. That was persisting even into the early part of my career. Folks like me and others who took that as a challenge, “really let’s see if that’s true,” really have challenged that. The first immunotherapy studies enrolled far ahead of expectations,. We learned that bladder cancer patients weren’t any different, necessarily, than lung cancer patients. We had just painted this picture. That legacy is slowly being eroded.

We are showing that really good science can be done in bladder, especially in bladder, in some ways. Tumors that grow in the bladder are accessible by cystoscopy. We can get sampling in a way that’s a lot harder than a tumor, for instance, deep in someone’s lung tissue. We have collaboration among urologists and medical oncologists in a way that allows for this flow of ideas. There are a lot of very specific things to bladder cancer and urothelial cancer that make it a great place to launch a career. Now, I agree. I think it has changed. I think people look to get into bladder cancer. We have a lot of fellows who are interested in it. A lot of the urology fellows focus on it. It’s hot right now, and well deserved. Right? It’s a disease that needs better treatments where we’ve seen progress in the last five years and where we still need good ideas again, and a community of investigators who are open to them, because, I think, of the culture BCAN’s created.

Rick Bangs:                        

Yeah. A lot of potential there that I don’t think people would have seen back in the early 2000s. All right. So, as a medical oncologist and with your tight relationship with BCAN, I’m assuming that you may direct your patients to BCAN information, the website or webinars?

Dr. Elizabeth Plimack:    

All the time.

Rick Bangs:                        

Good. So could you talk about what are your kind of preferred resources? Because I know you’ve created some of these resources. I know you’ve been on some of the webinars and you’re obviously part of the scientific advisory board and you’re guiding some of that. There’s handbooks. There’s videos. There’s Survivor to Survivor. So, what are your kind of preferred resources that you might send patients to, and what kind of feedback do you get from patients when you send them?

Dr. Elizabeth Plimack:    

That’s a great question. I would love to hear from our patient community, what ones are most useful to them, but the ones that seem to be most useful to them are any information around the decision around a cystectomy, right? It’s a big surgery explaining it sort of verbally with the tools we have in clinic is challenging. BCAN has really wonderful videos of patients speaking of their experiences. It has visual aids that help visual learners understand. What we find in clinic as the patient who is newly diagnosed with muscle invasive bladder cancer sees a urologist, a medical oncologist, or radiation oncologist. By the end of those visits is really information overload, layered a top, the very emotional visceral hit of you have cancer, and you need to make a decision. We want to engage by explaining in the clinic visit what’s going on, but we realized we’re limited, and that letting people digest what we say, go home and then learn in the way that’s easiest for them.

You know, sometimes it’s written materials, sometimes it’s videos, but if we can direct them to the BCAN website where they can start to explore that, they at least have, have a way of doing their own research and finding voices of others who can guide them. That’s incredibly valuable. We really encourage people to sort of go home after the clinic visits, wake up the next day with a cup of coffee, and kind of reevaluate what they’ve heard and look through these things. We are learning that patients, we can’t expect them to absorb everything we’re saying in the clinic visit and make decisions in a meaningful way. We need help. BCAN has developed such excellent materials around this, again, with input from experts that is really helpful.

I’ll give one example. I watched Peter O’Donnell do a video of explaining immunotherapy to a patient, and it was staged. It was with an actor, but I watched him. I’m like, “Wow, that’s exactly what I say.” You know, we’re all sort of saying the same thing, but having him as another voice saying it, right? Reinforcing the same conversation in a video. Someone can watch in the comfort of their home when maybe they’re less anxious is extremely valuable.

Rick Bangs:                        

Yeah. The website has just blossomed over the years. There’s so much material out there. Talk a little bit about what you are most excited about in terms of future priorities or projects.

Dr. Elizabeth Plimack:    

Sure. Being now as the chair of the BCAN Scientific Advisory Board, I’m really excited to take a big overview of where we are. What beacon looks like today, as we just discussed, has evolved so much from where it started. It has incredible strength, but for instance, what areas are most impactful? Where are we missing diversity of voices? Where is the gap from a patient standpoint where we’re not meeting those needs or could meet those needs better? Right? A general assessment of priorities is really exciting. We’re starting that. We’re starting to work on that and look at who’s on the advisory board. I think we also, a priority for me, is to engage a diversity of voices and ideas. By diversity, I mean, in all of the ways you would normally think, gender, background, all of that, but also rank, right?

We want to hear from the med students, from the fellows, from the people who’ve been doing this for 40 years. We want to hear all those good ideas. We want to hear from the patients. We want to hear from the caregivers. We want to hear from people who’ve spent their life working in lung cancer, but have an idea relevant to bladder, right? We want to hear those thoughts and bring those in. If we cast a wide net around the voices that we engage, in the conversations that we have, I can also say industry, regulatory, government payers, all these things that we don’t normally necessarily think of when we think of scientific advisory, I think this is how we’re going to get at the most critical questions and then deploy the appropriate resources to answer them.

Rick Bangs:                        

I’m excited. I think that makes so much sense. There are some voices that have just not had a place at the table, and BCAN’s always been good about bringing those people to the table. So, I think you’re asking the right question. All right. So what’s the one thing you want people who are listening to this podcast to know about the future of bladder cancer research?

Dr. Elizabeth Plimack:    

One thing! I have to pick one thing, okay. I would say that bladder cancer patients, clinicians, caregivers, we are hungry. We are hungry for more information. We are hungry for more evidence. We are hungry for better treatments. There is an urgency to evolving the field and evolving it quickly that will involve learning things, unlearning other things, learning new things, really being quick to adapt to new information, but that this particular community focused around this terrible disease is really ready for action on multiple fronts. So watch out.

Rick Bangs:                        

So much good stuff coming. All right, Dr. Plimack, it’s been a pleasure to have you give us this fascinating behind the scenes look at what’s going on and we appreciate your time today. I’m sure our listeners are going to enjoy it.

Dr. Elizabeth Plimack:    

Thank you, Rick. You’ve been there every step of the way with me. So, it’s been quite a ride. It’s been a pleasure to talk about it with you, reflect on it with you, and continue into the future together with you for BCAN.

Rick Bangs:                        

Thanks. Okay, in case people would like to get in touch with you, could you share your Twitter handle or any other information?

Dr. Elizabeth Plimack:    

Yeah. You bet. Twitter is a great place for conversation around the data as it comes out. So, mine is @ERPILMACKMD. Feel free to connect and engage on Twitter, thanks for listening.

Rick Bangs:                        

Thank you. Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at +1 888-901-2226. 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.

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 patients. For more information about this podcast and additional information about bladder cancer, please visit B C A N . o r g.