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Cheryl T. Lee, MD: Welcome to Medscape InDiscussion for season 2 of our Bladder Cancer series. I'm Cheryl Lee, and today is our final episode of this bladder cancer series. We'll be discussing advocacy efforts underway at the Bladder Cancer Advocacy Network, or BCAN. During seasons 1 and 2, we've described innovative science, practice-changing clinical trials, and novel therapeutics that are improving disease-free and bladder-cancer specific survival. Ultimately, though, those who care for patients with bladder cancer are not only trying to extend life but are trying to improve life. BCAN has been a galvanizing force for patients with bladder cancer, providers, and supporters. Today, we'll learn more about this amazing organization and how they hope to change the landscape of bladder cancer care. What are some of BCAN's key initiatives? How does BCAN engage patients and the medical community? And how should clinicians use BCAN as a support tool for patients? To further explore this important topic, we'll speak with Diane Zipursky Quale, an attorney, patient advocate, and the co-founder of the Bladder Cancer Advocacy Network. Prior to her work at BCAN, Diane was the Washington counsel for the National Broadcasting Company, what we call NBC, and was later promoted to vice president of Washington Law and Policy. She was a member of the Board of Scientific Advisors of the National Cancer Institute (NCI), served as the patient representative on the Bladder Cancer Taskforce, also at the NCI, and is currently an associate editor of the journal Bladder Cancer. Welcome, Diane.
Diane Zipursky Quale, JD: Thanks so much, Cheryl. I'm happy to be here with you.
Lee: Diane, you and your late husband John launched BCAN in 2005. Prior to this time, you'd been a successful lawyer, hustling and bustling in Washington, DC. What motivated you to build the patient voice that would ultimately be an advocating voice for all patients with bladder cancer? It's now nearly 20 years since that journey began. What's keeping you engaged and excited?
Zipursky Quale: Bladder cancer has been part of my world now for 23 years. John was initially diagnosed with bladder cancer in 2000, and at the time that happened, we had never heard of the disease, didn't know anybody else who had the disease, and were just shocked to find out how common it was. When my late husband was diagnosed with metastatic disease in 2001, we were overwhelmed and frightened to learn that there were so few treatments available for bladder cancer and also to learn about what the prognosis was for somebody like John, who had metastatic bladder cancer. We were lucky. My husband was an extraordinary man, and he beat all the odds and had an extraordinary response to chemotherapy in 2001. But as we continued to go through our bladder cancer journey, we got increasingly frustrated to find out that there had been so little research, so few dollars devoted to advancing bladder cancer treatments. We were continually frustrated by the fact that there were very few treatment alternatives for him; we both were Washington attorneys. Certainly, in our case, a bladder cancer diagnosis changes your life, changes your priorities.
John was initially diagnosed in 2000. In 2002, I left the practice of law because I wanted to find something else to do with my life to make more of an impact, and so I got involved in the cancer advocacy community. In 2005, John and I decided we'd had enough, and it was time for patients with bladder cancer to have a voice; we had hoped that being lawyers in Washington, DC, we could make a difference, so we decided to start the first patient advocacy organization for bladder cancer with the hope of giving a voice to patients with bladder cancer and their families, advocating for new and better treatments to save lives, and improve lives. I'm proud of what we've accomplished over the past 18 years.
Lee: That is truly an amazing story. I remember John, certainly, and we all miss him fondly. But as someone who did want to make a difference and have an impact, I would say you certainly have done that. The bladder cancer think tank has been such an important activity, forum, and event in the world of bladder cancer since the beginning of BCAN. So many stakeholders have come together at that meeting: doctors, nurses, researchers, social workers, industry, the federal government, just to name a few. I'm curious how BCAN has been able to attract all these individuals together to collaborate and really to focus on practice-changing initiatives. How's BCAN done it and continued to do it?
Zipursky Quale: One of the things that makes BCAN different from maybe some other patient advocacy organizations is from the very beginning, we've had this very strong relationship with the medical community, with the specialists such as yourself, who've been treating bladder cancer, and we really were excited about there being an organization like BCAN to raise the patient voice and to demand change, to get the attention of the federal government, and to get the attention of pharmaceutical companies so that we could have more research dollars and more time and expertise devoted to finding new and better treatments. The think tank, as you mentioned, our annual scientific meeting, has really been a way that we can focus on this need for collaboration. And I think really what makes the members of the medical community, the government, and pharma all come together at the think tank and throughout the year is that BCAN always makes sure that the patient and the patient's family is at the center of the conversation. This is not an academic exercise. We are talking about people's lives, and we are talking about impacting people's lives. BCAN makes sure that we are the patient voice, and we make sure that that voice is heard every step of the way and at every opportunity that we can. I think that's really what attracts the medical professionals to engage with us. We demand collaboration. We don't believe in silos. We want information to be shared, and we believe that information for the patient is powerful and that a proactive patient has a much better chance of better outcomes. That's what we all work toward.
Lee: It's always been encouraging for me and I think for others at that meeting to see patients there and to see other advocates outside of the traditional medical community. It really is a testament to the organization's ability to maintain that voice. There have been so many successful products and deliverables that have come out of the think tank and out of BCAN's efforts. I thought it might be nice to have you share some of BCAN's most successful initiatives, some related to advocacy or education or disease awareness, research, and even patient support. Any initiatives you'd like to tell our audience about?
Zipursky Quale: Well, how much time do we have? Because there are so many people and initiatives that I am proud of. BCAN's mission is threefold: raising awareness, providing support and information to the community, and supporting research. We have Bladder Cancer Awareness Month, which we just completed. It's during the month of May every year. Raising awareness is key to BCAN's mission, because the first time people hear of bladder cancer should not be when they are diagnosed. Yet, we are still seeing that happen. Bladder cancer is common, so it's important that people know it exists, can identify the symptoms, and can get treatment early. We now have walks to end bladder cancer throughout the month of May all around the country, and it's one way to make sure BCAN gets the message out within every state. In terms of providing support and information to patients, BCAN does an outstanding job. Our website is full of resources, and what we have recognized from the beginning is that everybody learns in different ways, so we have a variety of resources available to patients and their families. We have written booklets that are available to understand bladder cancer and to understand your diagnosis. We have webinars so you can listen to experts talk about specific topics that might be of interest to you. We have a podcast that we started a few years ago. That's hosted by one of our wonderful advocates, Rick Bang. So if that's the way you learn, it's one option. He interviews experts, and I believe he's interviewed you as well, Cheryl.
We also have support groups, both in-person and online. We have a program that I'm really proud of called Survivor-to-Survivor, where we match newly diagnosed people with volunteers who maybe are a little further along in their bladder cancer experience, to really help people as they are negotiating the bladder cancer landscape because it's very important that nobody ever feels alone. We have so many members of that volunteer community who have found support through BCAN and then decide to pay it forward and become a volunteer for other newly diagnosed people. That's how our community has been able to grow.
We have funded, I think, close to $6 million in research since BCAN was founded. I can't say that we have found the cure for bladder cancer or that we have funded a project that has led to a new treatment, but what we have done is provide the foundation for research to continue. One of our biggest successes in our research program is our Young Investigator Awards, where we fund junior investigators. We want to make sure the best and brightest people who are interested in bladder cancer devote their careers to it. We often are the first funders of these talented investigators who then go on to be leaders in the field. That's one of the most rewarding things that I've seen in the past 18 years with BCAN.
Lee: The impact of the research is phenomenal, as are the awareness efforts. I just walked in our Columbus bladder cancer walk, but I want to come back to the website. We all know that investigating a serious illness on the internet can be difficult in that you don't know what to believe or not believe. It can be overwhelming, but the BCAN website has been a tremendous resource in providing education not only to patients but to their families and friends. I wonder if you could comment a bit more about how patients can actively participate in their own treatment decisions and how the website has emboldened them to do that with the resources offered.
Zipursky Quale: Yes. As I said, we strongly believe that an informed patient becomes proactive and then has better outcomes. We are constantly revamping the website because as we have more information, we want to make sure that patients can easily find information that they want. We created our website so people can understand their own bladder cancer diagnosis and find the answers to their questions. We list frequently asked questions and have tip sheets, for example, if you are going to have your first resection of a bladder tumor, so you know what to expect. We have both specific and general information to address whatever people are looking for.
You mentioned medical professionals. I also want doctors to know we want to be their partner. We recognize doctors don't always have enough time to give patients the information they need and to answer all questions, and we aren't doctors, but we do provide resources that are vetted by members of our scientific advisory board. We hope medical professionals across the country can also use our website and our resources by sending their patients to BCAN so they can get answers through our vetted website and resources.
Lee: I know BCAN has not only used its voice with patients and with the medical community, but also in Washington to lobby the federal government. I'm wondering if you might share some of the lobbying initiatives to get the federal government to address bladder cancer issues and to think about some of the real and disproportionate challenges we face with research funding.
Zipursky Quale: We have been working on this from the beginning, and I'm happy to say bladder cancer is getting more of the attention it needs from the federal government now than it did in the past. We do have an annual lobbying day where we bring in volunteers from all around the country to meet with their representatives on Capitol Hill, raise awareness about bladder cancer, and raise awareness about the need to increase funding for bladder cancer research. One of the things we've been very successful in doing in partnership with the American Urological Association over the past several years is getting funding for bladder cancer through the Department of Defense through their research funding arm. That's been important because we believe veterans may be at a greater risk for bladder cancer, often because of the exposures they've had on the bases or in the war zone. That's been one of our great successes, and we've worked very hard with our relationship at the NCI to make sure we continue to get funding and as much as we can, specific funding for bladder cancer projects just to make sure that we are no longer at the bottom rung of the ladder, which we were when BCAN was first getting started in 2005. And I'm happy to say we've seen a greater increase in funding of research projects, both through the NCI as well as through the Department of Defense.
Lee: Well, we have covered quite a bit over the past few minutes.
Zipursky Quale: Just getting started. Cheryl.
Lee: I appreciate that. But I wonder in our in our last couple of minutes, maybe you might just share a bit about what's next for BCAN. What can we anticipate is coming? I know that there's so many new research funding mechanisms, but what else would you say we have in store from BCAN in the coming years?
Zipursky Quale: I think one of the top priorities for BCAN in the coming years is to make sure we can reach patients everywhere that they are and to make sure everybody who's diagnosed with bladder cancer knows about BCAN and has access to our resources. So that means increasing our partnerships with medical professionals in rural areas, in smaller cities all around the country, making sure that we are not just focused in certain pockets but that everybody hears about BCAN. That's going to be one of our greatest efforts over the next few years, which will, of course, continue our robust research program. Our research program has been focused always on filling in the gaps, funding those things that aren't getting funded elsewhere. We will continue to identify those gaps and find creative ways to make sure we are devoting the resources necessary to find the better treatments and to improve patients' lives.
Lee: Well, I look forward to being a part of that in any way that I can. It's been so wonderful talking with you today. I'm so grateful for you to drop in. I want to also thank our listeners for joining in today with my conversation with Diane Zipursky Quale, the co-founder of BCAN. If you enjoyed this episode or missed our first five bladder cancer sessions in season 2, be sure to check out the Medscape app and share, save, and subscribe. I'm Cheryl Lee for Medscape InDiscussion.
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Cite this: How to Improve the Experience of Bladder Cancer: BCAN - Medscape - Aug 22, 2023.