Kidney Cancer Patient Survey Findings: Impacts from the COVID-19 Pandemic - Dena Battle
Dena Battle and Dr. Staehler share findings that came from this survey and the group discusses responses, what they tell us and how to use this information in the best way to manage patient treatment during this time.
Dena Battle, Co-founder, and President for KCCure a passionate kidney cancer patient advocate. She began her career in Washington, DC, as a congressional aide, and went on to work as a lobbyist for more than 10 years, working primarily on tax and healthcare policy. She serves on the Advisory Board for the Johns Hopkins Sidney Kimmel Cancer Center and as a member of the Patient and Family Advisory Council. She has testified before the FDA – Oncological Drug Advisory Board (ODAC) and helped co-author an NCI-ASCO-sponsored paper on improving end-of-life care for cancer patients. In 2009, at the age of 40, Dena’s late husband Chris was diagnosed with metastatic kidney cancer. Together, they began a quest for the best care possible to combat the disease. Chris was treated at four different comprehensive cancer centers and participated in multiple clinical trials.
Michael Staehler, MD, Ph.D., Professor, Department of Urology, Head of the Interdisciplinary Centre for Renal Tumors, Ludwig-Maximilians University, Munich, Germany
Jaime Landman, MD, Professor and Chairman, UCI Department of Urology, UC Irvine Medical Center
Sumanta Kumar Pal, MD, Professor, Department of Medical Oncology and Therapeutics Research, Co-Director, Kidney Cancer Program, City of Hope
Jaime Landman: Well, welcome to Kidney Cancer Today. One of the many wonderful series from UroToday. My name is Jaime Landman, Chair of the Department of Urology at the University of California Irvine, and I'm here with my partner, Dr. Monty Pal. Welcome, Monty.
Monty Pal: Hey, thanks a lot, Jaime. I'm a medical oncologist at the City of Hope Comprehensive Cancer Center in Los Angeles here just a couple of miles away from Jaime. We are just delighted today to have, again, repeat guests, in fact. Dena Battle and Dr. Michael Staehler from KCCure. Dena is a very vociferous and very effective advocate for kidney cancer patients. Dr. Staehler is an expert urologist in kidney cancer at the University of Munich.
This is a very, very tumultuous time for us given the COVID-19 situation. In fact, that's really why we've called upon your expertise here.
Dena, one of the things that I just adore about you is that you really have boots on the ground as a part of leading KCCure. You're constantly talking to patients about their perspectives. Tell us what patients are saying in the face of COVID-19 about their treatment.
Dena Battle: Yeah, I think this is a time where it's something obviously none of us have ever seen. It's really devastating to see patients, the uncertainty surrounding everything, people who are dealing with cancer, which is already a very terrifying situation. Then add in this pandemic that adds this new layer of uncertainty. It's really tough to watch to see people going through this on a daily basis. Questioning whether they're going to get their treatment, people who are newly diagnosed, not knowing whether their surgery is going to take place. Sort of the fluidity of changes that occur every single day as the situation evolves, not really knowing what's going to happen, I think, it's really hard for everybody. Not just for patients, for providers too.
Monty Pal: I can totally imagine. I mean, it's just got to be such an enormous battle to sort of weather the risk of a cancer diagnosis and face COVID-19 under the same circumstances. Jaime?
Jaime Landman: Yeah. So Michael, how are things in Europe? Because I think we sometimes see the world a little differently, but this, the biology of this virus is the same everywhere.
Michael Staehler: It sure is. I think we're a little bit further down the line and you guys in the hospital are prepared to just treat the COVID patients anymore. So you have to close the surgical theaters, you have to close the wards. You're just getting prepared for that. And then just to give you our perspective on what's going on the beginning of that week we had about 40 patients on one ward and 15 on ventilators, which doesn't sound that many actually. But given the fact that we only have 60 ventilators, it's a lot.
By the end of this week that just doubled. So we have two wards with COVID patients and two intensive care units for getting prepared for it. Of course, you have to scale back everything around them. So you have to scale back your outpatient visits. You have to scale back your infusions, just simply because you don't have the capacity anymore. Twenty percent of your staff is not going to be there. They are at home, they are sick themselves, they're infected or they're quarantined.
Monty Pal: Well, I mean, I actually think that's a great segue into a survey that you and I and Dena have a lot. This just couldn't have been done without KCCure. Just a very, very impressive effort to really understand what patients are thinking about COVID-19 in the face of their diagnosis. Dena, do you care to elaborate a little on the structure of the survey?
Dena Battle: Yeah, I mean, and thank you both for working with us on this survey. But we really wanted to get something out quickly to make sure that we could really understand how patients feel about their treatment in this time of uncertainty. So we were able to put something together very rapidly. We launched it on Monday, ran it for three days, and we had over 500 responses. I really want to say thank you to the patients in our communities who stepped up and took part in the survey to share it so that we could have a fuller picture of what patients are experiencing and really what they hope for and what they want. Especially, as we're making decisions about how to treat cancer in this pandemic.
Monty Pal: Mike, tell us a little bit about what the survey entails, what sort of questions we asked, et cetera.
Michael Staehler: So actually we were taking patients' opinions on first anxiety from COVID. What's happening to them if their infusion is going to postponed, if their surgeries get postponed, if they can't see their doctors anymore. We want them to know how they feel about it. If they're willing to take the risk, how they're protecting themselves, what the situation is for them in the view of COVID. Because as you know best, there is a lot of discussions going on, especially from some KOLs that you should postpone infusion therapy that you should maybe not start therapy for patients in metastatic diseases. And even not do surgery in patients with localized disease or locally advanced disease. That does something to patients and we wanted to understand what is going on there. I think we haven't covered all.
Jaime Landman: First of all, I want to thank Dena, bringing the patient perspective into this is so important. Because I think very often we consider it but we only consider it from what we think the patients are thinking. It's so utterly critical to actually listen. We all learn from listening. You don't learn a whole lot by talking.
So, Michael, I want to ask you how you're facing this because you're a little ahead of this, but we're already seeing this already. You and I both know that if you have a three-centimeter small renal mass, you delay treatment via surgery or ablation or anything for a few months for those very localized diseases, the chance of changing the outcome is almost nothing. But I'll tell you if I had a three-centimeter mass, I'd be terrified out of my mind. I know some of my patients who I'm delaying their surgery are very concerned. Do you have any advice on how we can address that?
Michael Staehler: So it takes a lot of time to talk to those patients and to assure them that it's safer not to do the surgery at that moment. Because the likelihood of dying from their cancer is so much lower than the likelihood of dying from COVID. They have a risk of getting infected on the way to the hospital or even while they are in the hospital, and we just want to make sure that they're safe. So postponing it is actually making them safer. If you come from that perspective, patients are willing to accept that. They still have a hard time with it. I'm totally with you. I would want to have it out as soon as possible, too. And we're trying not to postpone surgery in patients that really need it like locally advanced disease or where you would say, hey, this is in a spot where if it grows just by two or three millimeters within the next time, you can't do a partial anymore because it's so centrally located or something like that.
These are still indications that we push to do. I think we can do it if the hospital will be completely run over by COVID patients. But as long as we can do, we're not putting those patients at risk. It's all just about balancing the risk of COVID versus the risk of cancer. Sometimes, I just have to offer them a biopsy to assure them that they don't have a high-risk tumor. That's a biopsy to have them a little bit safer. Even if I wouldn't do the biopsy in the first place in that sequence.
Jaime Landman: We have debated the biopsy issue previously but couldn't agree with you more. Just yesterday I had two very long conversations with patients talking to them about the risk-benefit ratio and quite frankly how I do... I agree with you. For a small renal mass T1a, incidentally found that there the risk of the surgery and being in the hospital and exposed to people is much higher than the risk of delaying the surgery a little bit. But it is something we have to dedicate time to and I'm glad that your approach of dedicating time for communication is kind of what we've started doing as well.
Monty Pal: Dena, can you maybe expand a little bit more on some of the results from the survey in the context of more advanced disease patients who have maybe already had surgery, patients who have had metastatic disease that diagnosed, what did the survey really illustrate there?
Dena Battle: Yeah. Monty, you and I talked a little bit about this as these results came back. Usually, for asking a question, I often will have an idea of what I think the answers are going to be. In this case, the fears related to a COVID-19 and then the anxiety related to cancer, I really wasn't sure how the results would weigh in. But what we found with metastatic patients, especially because so many of them are receiving infusion therapy now that our two first-line therapies involve infusion therapies. What we saw was patients are, they're on infusion therapy and they're very worried about losing access to their therapy.
A few things that stood out, 70% of patients believe that they are at higher risk of acquiring COVID-19. That's their own opinion. If they ask their doctors, actually the risk was much lower in terms of their risks versus the general population. They believe their risk is very high. They still were reluctant. They didn't want to cancel their appointments. They were very unwilling to cancel appointments. They very much wanted to go in. They wanted to meet with their doctors. They still wanted to keep their scans. They didn't want to pause their treatment and they certainly didn't want to discontinue their therapy.
I was surprised by some of those numbers because I expected there to be a little bit more of a balance. But the majority of patients still want to get treatment.
If you really stop and think about it with metastatic advanced cancer, your risk of dying is high from this disease. And then we look at the risks with COVID-19 and the risk might actually be lower. I think it's important for us to think about how patients feel. We owe it to them to think of creative ways that we can ensure that they can stay on therapy if possible. And certainly in cases where the disease is progressing rapidly so that they have a fighting chance against their cancer.
Jaime Landman: So Dena, that is so true. The anxiety is so high. I'm going to pose a question to both Monty and Michael. I know there are no prospective randomized data on treatment interruptions. Data is king and that's how we should make decisions because we want to optimize our patients' health and wellbeing. So I ask you both, Monty, for example, what do you think about interrupting disease? I know that everyone's a little different and every treatment different. But what are your thoughts? What's the right thing to do right now?
Monty Pal: Yeah, absolutely. It's a loaded question. For those patients that are stable on therapy for years and years, you might consider a pause, but you also worry about stripping off that bandaid that might be holding the tumor back. Truthfully, I actually think that that's what Dena and Michael's KCCure survey really reflects. Patients are really, really reluctant even after considerable time on therapy to pull out treatment.
I think the real message from the survey is that if we're going to modify appointments, schedules, et cetera. It's got to be a decision that's made in concert with the patient. I think that there are a lot of automated processes that are being deliberated in hospitals. Stop patients if they've gotten more than a year of immunotherapy from getting further infusions. I think that's totally incorrect. I think we've really got to make sure that the patient and provider are having that conversation and making a concerted decision. And that's really the message that I take from the survey. Mike, what about you?
Michael Staehler: So the message saying that I got from it and just focusing back on the data, there's some data that we actually have patients on complete responses if you've taken them actively off therapy. I think our job is to keep them safe. Nobody of us knows how long this pandemic's going to last, how long we can provide services to patients. As long as we can, we should not prematurely cancel their infusion therapies or their therapy to pause it because we don't know how long the pause is going to be.
We can work hard on making them safe in the hospital. We can have them go through separate entrances, separate them from others, have them a little bit further away from each other and just make sure that they don't get it. I actually don't think that a hospital is more dangerous than a grocery market to catch COVID-19. But we know better how to protect everybody.
Monty Pal: Yeah, that makes perfect sense. Dena, I've got to ask you this. I mean, I think this is such important information for patients and providers. I loved your quote in the Washington Post just two days ago. I thought it really spoke very well to some of the preliminary results we were getting from the survey. Any thoughts as to how KCCure might disseminate the data?
Dena Battle: Yeah, we're really working to get this out. We're going to get it up on the website. We're working on that right now as we fully analyze everything, try and get it out to patients, to providers and to journalists and policymakers too. One of the things we did this week was to try and get preliminary data up to Capitol Hill as they were working through this stimulus package. Are there ways that we can expand reimbursement policies to allow, for example, for infusions to be given by home health care? It might not be an ideal way for patients to get their therapy in other situations, but in an emergency situation and if we do see that this is going to be lasting longer, is that an opportunity for us to make sure that patients are losing out on their opportunity to continue therapy? That's just one example. I think we really have to think about this as a long-term possibility and how do we protect those patients and how do we find ways to make sure that they can stay on therapy.
Monty, you made the point about how you're communicating to patients. I think what we're seeing, what we're hearing, unfortunately, from some patients is they just get an email or a message on her phone saying, "My infusions are canceled indefinitely."
That's a terrifying thing for a cancer patient to hear. So part of this is thinking of ways to help patients stay on therapy. Part of it is also communicating and letting them know, "Hey, we're going to have a treatment pause. This infusion is not going to cork but we're going to do our best to make sure that the next infusion does occur." Just something to give them a sense that this is more than just, "I'm indefinitely canceled off the schedule." How do we make them feel confident about their care during this time is something we all have to work on together.
Monty Pal: Well, I think you kind of segued brilliantly into what I was going to really ask you about next, which is policy changes. You have a long and very successful history in Washington advocating for cancer-related causes and well beyond that, in fact. Tell us beyond, for instance, home infusions and so forth what you're advocating for from the standpoint of kidney cancer patients there.
Dena Battle: I mean, I think really to what we just talked about, part of this is letting the medical community know that we really need to think about communicating with patients. Hospital providers need to think about how if appointments are being postponed or changed, how we can make sure that that person has an in-person contact to let them know that this is not just... That there is going to be some type of followup.
One thing on the survey that it showed us was that almost 50% of patients said that they do not have access to virtual appointments with their doctors, that they don't have access to telephone capabilities. We have to get providers working on this to be able to communicate in multiple different ways. I know hospitals are struggling with resources on so many different levels, but those are the type of things that we're hoping that this survey can push out.
Like I said, policies that will allow more flexibility for providers to provide those types of things. Reimbursement. We were talking about that with home health. But the same thing has to be true for virtual appointments and making sure that hospitals and providers can get reimbursed for a clinic visit that's online.
I think there's just so... It's hard to even narrow down all the different ways that we're working on this, but just really getting the information out there about what patients are experiencing in the lake of the pandemic. All the challenges and then how can we work together to fix those. That's what we're focused on.
Jaime Landman: Dena, I want to thank you again for the patient perspective. I'll tell you, you could not be more, right. Communication is key. The idea that somebody would just get an email telling them that their treatment is terminated is almost, it's not almost, it is abhorrent.
I will tell you that one of the things we should be getting out and about is that the rules for HIPAA and other telecommunication meetings have been suspended and altered very quickly. I just know on a departmental level, we're almost back up to full force in terms of the patients we're seeing and we're doing it all virtually. As horrible as this situation is and this is something we have to share with kidney cancer patients now. There are good things that come out of it, which is people love these virtual visits. Most visits, followup visits can be done virtually. You don't have to worry about driving, finding a parking spot, especially when you're not feeling well. All these things can be very challenging.
So our patients are really enjoying the virtual visits. Patients should be pushing their docs for a phone call because even a phone call is reasonable. Better to have a video chat than a phone call. But a phone call is reasonable and doctors can be reimbursed for those now.
The other question I really wanted to ask you, and again, I hate to leave the topic, but you always have to look for a silver lining, is this work you've done is utterly brilliant and so transformative to our ability as physicians to help our patients. Maybe this should be something we routinely do... Survey patients to get feedback so that we don't just assume what they want but rather hear what they really want. Sometimes we really just have to listen better.
Dena Battle: Yeah. Well, this is our fourth survey that we've done with KCCure and this has really become something that is central to the core of our mission. I think having the survey done from an advocacy organization and having surveys that are developed by patients for patients makes patients more open and honest, more willing to participate. It also shows that it's... No, this is the unvarnished truth. This is patients really telling what matters to them and what they want. And that gives providers the opportunity to respond to that. Just because the patient says they want, this doesn't mean it's the right thing. But it means providers can stop and say, "All right. We're going to have to find better ways to communicate this, to make sure the patients feel comfortable with what's best for them and what we're recommending."
So we're very excited about this new way of capturing the patient views. We plan to continue doing this and expanding our efforts.
Jaime Landman: Well, I could not be more grateful for what you're doing. You're bringing amazing value. Hopefully, we can continue to work together with you. I think that will conclude this episode of Kidney Cancer Today. Michael, Dena, thank you so much again for joining us. On behalf of Monty Pal and myself, thank you all for listening. Have a great day.