Unmet Needs and Future Perspectives in the Treatment of RCC

Chung-Han Lee, M.D.: Speaking of advocacy, Mr. Lewis, you run KidneyCAN. You have been instrumental in getting all of this funding for kidney cancer research. Talk a little about resources and the challenges that are coming up for the field.

n Lewis: First of all, thank you, Dr. Lee. Meryl, your story is so inspirational and moving. We need to cut that section out and make it a motivational speech to send around. It was awesome to hear that. I have a couple of other thoughts on that before we talk about advocacy a little.

Ms. Virdee, what you pointed out about communication is so important. It’s hard to communicate in the medical environment. Sometimes people are intimidated. But if you create an environment where there’s collaboration, discussion, or shared decision-making, and there’s a sense that people can be comfortable talking with you, with their medical providers, that’s huge. That’s a huge barrier that a lot of people don’t realize. They come into a hospital setting and it’s off-putting at times, or it can be scary. Breaking down that barrier of communication and allowing for communication is so important. Especially because many of us have been on Google looking for information and have misinformation.

Another point I want to touch on is that we talk about side effect management a lot these days because it’s so important. I’m not sure where this goes exactly, but the medical profession talks about grades 1 through 5. We don’t even want to talk about grade 5 most of the time. I’m wondering if we can’t dive down a little further, because it’s hard to distinguish as a patient the differences between grades 1 and 2 and between 2 and 3. We don’t have time to go into that right now, but that’s something we need to work on as a community.

Quality-of-life measurements are gaining importance in clinical trial design and development. We all applaud that. Now it’s up to us to try to figure out how we approach quality-of-life measures as a standard across society. One of the things someone told me recently is, “When you think about measuring quality of life, what you’re not taking into account is that you had a different quality of life prior to having cancer. You now have a new standard of what your quality of life is because you have cancer.” You have to keep that in mind.

Thank you for this opportunity to hear Meryl’s story—that was awesome—and the latest on personalizing medicine. That’s very inspiring for the patient community to hear. Quickly on the front with advocacy, as Meryl pointed out, kidney cancer has been underfunded for many years. As you said, Dr. Lee, we’re sixth or eighth or ninth, depending on the year and gender, but we’re in the top 10 of cancer diagnoses. We need to have more funding to find out what’s going on in this space.

KidneyCAN and eight or nine other organizations partner to do advocacy on Capitol Hill in Washington, D.C. Yesterday, we finished about 180 meetings with 39 states represented. I have to give a shout-out to our wonderful leader, Debra Beyhan, from Atlanta, who’s organizing most of this. We have doctors, researchers, and patients talking to our elected representatives and saying, “Thank you for this investment in kidney cancer research, but we need more.” We need more at the NIH [National Institutes of Health]. We need more through the KCRP [Kidney Cancer Research Program] and others. And I think our voice is being heard.

We’re louder these days than we have been in the past, and we continue to march forward, but we’ve got a lot of ways to go. The reason that came front and center yesterday was because I was on a call with one of the Senate offices, and one of our patient advocates told her story about being diagnosed with kidney cancer, but then during treatment being subsequently diagnosed with breast cancer early on. She compared her treatment for breast cancer early on with her treatment for kidney cancer, and it’s unfortunately night and day. The amount of research and knowledge that they have around breast cancer these days is off the charts compared with the knowledge and information on kidney cancer. We have to change that. That’s what we’re doing. With people like you and others who are doing the research to help advance cures, that’s what we’re all in this together to do.

We’ve been very fortunate to have some champions in Congress. We’re continuing to march forward. We asked yesterday for $60 million for the KCRP. I got cautiously optimistic, but we heard this morning that the omnibus bill that came out for this fiscal year includes our $50 million for kidney cancer research. We locked it in for another year. Now we have to get some more, and efforts like from everybody on this call is making a difference. Thank you for this opportunity.

Chung-Han Lee, M.D.: Yes, the work that you do is fantastic. The ability to have a unified voice from the patient, advocate, researcher, and clinician front is necessary to think about how we can move the field forward. The ability to have all of these scientific advancements unfortunately isn’t free. These types of investments that we’re all making are critical for thinking about how we can advance the field and change outcomes for patients.

First of all, let me thank all of you for joining me today and sharing your valuable perspectives. And to our viewing audience, thank you for joining us. We hope that you found this episode of the CURE Connections® program to be rich and informative.

Transcript edited for clarity.