Highlighting Clinical Trials | Advanced/Metastatic Bladder Cancer

Highlighting Clinical Trials | Advanced/Metastatic Bladder Cancer Part III: Research Advocacy June 26, 2018 Presented by: Rick Bangs is a MBA, PMP; and he's a bladder and prostate cancer survivor. He's worked as a patient advocate in a variety of roles including research advocacy, government lobbying, educational support, support groups, oneon-one support, and fundraising. Rick has long been a friend of the Bladder Cancer Advocacy Network. As a research advocate, Rick serves as a member of the National Cancer Institute Council on Research Advocates as a co-chair of the NCI Patient Advocate Steering Committee. He is one of two NCI Genitourinary Scientific Steering Committee patient advocates and one of the three NCI Cancer Care Delivery Scientific Steering Committee patient advocates. Rick is the Chair of the SWOG Patient Advocate Committee, a member of the SWOG Executive Advisory Committee, and Committee Chair for the SWOG Bladder Cancer Patient Advocate Group. Rick: So I've got three things I wanna talk about. I wanna talk a little bit about my story. I wanna talk about research advocacy and the way that patients can help the researchers with their studies, and I also wanna talk a little bit about metastatic bladder cancer. Okay, so I was diagnosed in 2006. I was diagnosed with Stage 2, which many of you would recognize as being muscle-invasive bladder cancer. I have a neobladder so I had a cystoprostatectomy, and as a consequence of doing that I wanted to do things to give back. And so I found the Bladder Cancer Advocacy Network and connected with them. Had an opportunity to do some amazing things with them, and I also do some work with SWOG, which is one of the groups that executes the clinical trials, many of the trials that we talked about on this call. I also do some work with the National Comprehensive Cancer Network, which is one of the groups that defines the standard of care, so there is an opportunity for patients to participate in the communication and also the establishment of standards. And I do some work with my counterparts in the National Cancer Institute in a leadership role that I have with other patient advocates. I also work in a new area called Cancer Care Delivery, which talks about things like financial toxicity and palliative care and some other interesting things about the way that we deliver care to patients.

Highlighting Clinical Trials | Advanced/Metastatic Bladder Cancer Dr. Andrea Apolo, Dr. Arjun Balar & Rick Bangs

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Alright, so in terms of clinical trials, there is a role for patients in this process, and I just wanna kinda briefly explain in a very simple manner what that role is. So if we think about a clinical trial, we can divide it into a life cycle that starts with planning. And so during the planning stage we're trying to figure out what we're going to target and what the treatment is that we're going to use. And so I would work with the researchers like the two doctors on the call here or other doctors and try to make sure that the concept makes sense, that there is an appropriate benefit to the patient and that the risks don't overwhelm those benefits. Side effect is obviously one of the risks that we would consider there. And shape that concept so that we can then present it for approval and funding. So that's the planning stage. During the implement stage, I would work with these same researchers. We would work on a document called the protocol, which is literally dozens and dozens of pages describing exactly what's gonna be done in the clinical trial. And those of you who have participated in a clinical trial would recognize that there's a form that you need to sign, which basically tells you about the clinical trial and makes sure that we present it in patient-friendly language. That's called the Informed Consent, so I would work on that document to make sure that it makes sense for our patients. And then any other patient materials that are presented. So that's done in the implement stage. And then we're reaching out to patients, the doctors are reaching out and working with patients to inform them about the trial and then work through the Informed Consent and then work through the actual trial itself. The last stage is the share stage. So we've done all that work to create the clinical trial. We've got all our patients signed up for the trial and now we have the final results, and I would work with the researchers to share those results so that other patients can understand what the findings were. And as you can tell from this call, there's some very exciting work happening in the bladder cancer space. So there's a lot of exciting things that patients are getting an opportunity to hear about that in the early days of my diagnosis for example were not the case. From start to finish this life cycle can take anywhere from eight to ten years. I think that's relatively typical, although some of these smaller early trials can take less time. So let's talk about what's new. So first of all, in advanced bladder cancer we have incredible interest by many of the pharmaceutical companies. When I was diagnosed, that wasn't the case. But I can tell you today the pharmaceutical companies are really excited about the opportunity to work in the bladder cancer space, and they have a lot of new and interesting drugs that are being developed and also some


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fairly significant approvals in this space. And you've heard about our five immunotherapy drugs, which are an exciting addition to the drugs that we have available to patients. Immunotherapy is obviously driving a lot of interesting questions about immunotherapy itself, about the sequence in which we should apply immunotherapy and some of these other interesting drugs. And also the questions around the combination because now we've got another thing to add to chemotherapy and radiation therapy, so we can talk about adding immunotherapy and some of these other drugs to the mix. And so there's also some interesting questions around whether or not chemotherapy will retain the gold standard in the bladder cancer space, and obviously immunotherapy has overtaken it in some areas but we certainly want something ... In the long run we want drugs that are gonna work for all patients, and so we're still not quite there. So Stephanie, you're gonna talk a little bit about finding a clinical trial? Stephanie: Yeah. So BCAN tried to make it a little bit easier because sometimes going to clinicaltrials.gov, which is where they list all of the clinical trials that are going on can be a little bit overwhelming. Almost like trying to take a sip of water from a fire hydrant. There's just so much available. So what BCAN did was on our website, bcan.org, you can find a clinical trial and when you get there, you can search by the type of bladder cancer that you have and also select the states where you might live or where you might have family members that you could stay with. And then you could share that with your loved ones, you can share it with your doctor, ask questions about it, so I definitely encourage everybody to look at our dashboard at bcan.org or clinicaltrials.bcan.org to find some trials near you so that you can ask your doctors about them.

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