The National Cancer Institute at the National Institutes of Health is a lot more than a group of buildings in Bethesda, Maryland. It’s an institution that provides vital support for cancer research, and connects a national network of cancer centers that treat patients around the country. In this episode, Chuck and Alicia talk with outgoing NCI director, Dr. Kim Rathmell, about the role of the organization and some recent points of progress.
Downloadable transcript here
Dr. Alicia Morgans: This is The Good News About Cancer. I'm Dr. Alicia Morgans.
Dr. Charles Ryan: And I'm Dr. Chuck Ryan.
Alicia: We're oncologists, and we've spent our careers working to understand cancer. We believe that there's more progress now in research and treatment than there ever has been, and we're here to share that with you.
Chuck: In each episode of the show, we talk to one of our colleagues about a new development in cancer treatment or diagnosis. We'll break down what's new, why it matters and how it points a new way forward.
Dr. Kimryn Rathmell: I'm incredibly optimistic about where we're going with cancer. The knowledge that's being gained, that's leading to the drugs that are coming is just phenomenal.
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Alicia: I think many of our listeners have probably heard about the National Cancer Institute or the NCI in the news recently, Chuck, you know, because a lot of us are thinking about changes that are happening in the government right now. And the NIH, National Institutes of Health, and the NCI, the National Cancer Institutes, are certainly being affected by a lot of the changes and cuts.
And I think that one of the things that we wanted to highlight is that these organizations have made a massive amount of progress in the last number of decades with the care that we deliver for people with cancer, doing the research themselves or understanding the patterns of disease and thinking about ways for us to really intervene and help save as many people as possible.
Chuck: Well, Alicia, let me put it another way. Which is: I would love the folks who are listening now to think about the people they've known in their lives who've had cancer. If you know somebody– a woman who's had breast cancer, who had a surgery and then maybe had chemotherapy, and is doing well. If you know a family or you yourself had a child with a childhood cancer, leukemia, lymphoma, one of those, who was treated, cured, and doing well. If you know somebody who has struggled with an advanced cancer that doesn't have a treatment, or a rare cancer, and even if they're not doing particularly well, they have hope that there is work being done on their problem, then you know somebody who is benefiting from the work of the National Cancer Institute.
So this is a far-reaching organization that affects patients, that has dramatically contributed to the 4.7 million lives saved that we've talked about previously. And it is an essential component of what has made the United States the world leader in biomedical research, not to mention biotechnology and other forms of technology. And this is incredibly important for the future, as well as the past of the good news about cancer.
Alicia: Well, I completely agree and one of the things that we are so fortunate to have been able to do through this podcast has been actually to interview Dr. Kim Rathmell, who is the outgoing leader of the National Cancer Institute.
And we actually invited her to come and talk with us back when she was the director, and then we were able to speak with her just after she had left the position. So either way, we feel excited and really feel like it's an opportune time to celebrate recent progress that's been made at the National Cancer Institute and all of the ways that it has helped advance cancer care.
Chuck: And I was really excited to talk to Dr. Rathmell also because what caught my eye was this post they did – I saw it on LinkedIn, but I think it was in a lot of places – on the 24 areas of progress of 2024. And it really was a surprising, very all-encompassing, basic science, clinical trials, et cetera. So, I thought she'd be a great interview and I think we should take a listen.
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Alicia: So, Kim, it is wonderful to have you and to be able to talk with you about your thoughts on the good news about cancer, especially because of your recent role as the NCI Director, now former NCI Director, National Cancer Institute. So thank you so much for joining us.
Kim: Well, thank you. I'm glad to be here and, and really excited to talk about what's good in cancer because there, there's a lot.
Alicia: Let's start with the first thing, which is that you were leading this group, the NCI, the National Cancer Institute. And I don't know that everybody even knows what the NCI does and all of the things that it does for the people in the United States.
Kim: Yeah, the National Cancer Institute is one of 27 institutes and centers of the National Institutes of Health. It's the largest, by a good margin and supports the lion's share of cancer research, across the nation and the world.
Every new drug, every new intervention started with a discovery that was funded by the National Cancer Institute. So we fund the basic science, we study translational work, we do the kinds of clinical trials that are not the priorities of industry, and things that really just answer the questions that are on doctors and patients minds. And we also fund a lot of the infrastructure that makes it all possible.
Alicia: You know, it'd be great to pull back the curtain and try to understand: why is it so important that the NCI is involved in research? Why is it something that we even need an NCI or National Cancer Institute to support? Couldn't we just get pharmaceutical companies to pay for all of this so that we all have drugs and, and someone else is picking up the bill?
Kim: One of the things that people, I think, don't realize is how much time we spend at the NIH or the, at the NCI really looking at the ecosystem and looking at where is there a gap or a need, where is there a space that we can help fill to help ideas get to a commercializable state, help people get to the place where they can market an idea.
And the NCI doesn't actually keep any of that revenue, right? Like, it's a government-sponsored support for bridging this gap. So we have lots of resources to help someone who's made a basic discovery do some of the early phase screening and get it to that prototype drug, where suddenly a drug company might become interested in it.
And, and cancer is not just about drugs. We have to really understand cancer before we can get to drugs. And there are far too many areas to dive into to have that really be a focus of the drug companies. Drug companies can certainly make great discoveries, but if you think about some of the immunotherapies today, some of the foundational work that got us to doing that was basic scientists studying immune cells, how they turn on, how they turn off, some of these fundamental cellular biological questions.
And I think that the culture that has evolved of real collaboration is truly exciting. So engaging as full partners, government with industry and with patient groups, because we all bring something different to the table.
Chuck: I think we should point out that the National Cancer Institute isn't just a group of buildings in Bethesda, Maryland either. It is, uh, probably relatively close to wherever somebody's listening to this in the United States, due to the Comprehensive Cancer Center structure that you have. Talk to us a little bit about that, just so people know the geographic distribution.
Kim: Yeah, absolutely. When I say the NCI, that that absolutely means everyone who's touched by the NCI infrastructure, NCI funding, NCI support. So, one of the really unique things in cancer is the network of comprehensive cancer centers and that's a network of currently 72, cancer centers in, I think it's 38 states, across the country, really responsible for that, that whole continuum, the training, research, clinical care and responsibility for the public health of a set region around those cancer centers.
With a network like that, we're able to push innovations out very, very rapidly across a really large network. It was actually formed as a requirement of the National Cancer Act of 1972, initiating the war on cancer, so just a little over 50 years old. And support from the NCI brings that community together to be able to rally around cancer in a way that's not possible or not as easy, without that infrastructure.
Alicia: One of the things that you touched on was not just networks of cancer centers, but networks of clinical trial organizations. These are– these are just groups of institutions that work together to perform clinical trials across the country for all different disease types– or all different cancer types I should say. I wonder if you can speak a little bit about that and, and is that an important piece of our clinical trial infrastructure as well?
Kim: Yeah, it's a hugely important piece because you know, some sites might enroll more older patients, some might enroll younger patients. We want to have the breadth of human experience when we do a clinical trial. And so having that, that kind of broad network can be incredibly valuable.
Chuck: Well, the NCI has been around for decades and has its influence now spread throughout the country. And I think that there's not a cancer patient in the country who has not been affected by or benefited from the role of the NCI.
Let's focus on the more recent past, 2024 in specific. The NCI put out a very nice publication on the 24 highlights of 2024. I wonder if you could tell us which of these 24 highlights rose to the top for you as perhaps the most important or the most salient, for listeners.
Kim: That's a really hard question because there were far more than 24, really exciting, new discoveries or outputs from the NCI. And that's hard when you're in it, in that position, you see something new every day, every hour. So the 24, I just have to say, are 24 of a good thousand. So picking the best of the 24 is, is even harder.
So I'll tell you, of things that are really new in, in 2024 – because many of those things had been building for a few years before they really hit the street in 2024 – but in 2024, we took on an initiative to really address early onset cancers. That I'm very excited about.
So people between the ages of 18 and 49, it's a lot of different cancers happening with different rates in different parts of the country. It's a hard problem to tackle, but there's no place else than the NCI that can do something like that.
Alicia: Let me dig in just a moment on this early onset cancers, because I think, you know, some may say, well, gosh, there's a rise in early onset cancers. That is a terrible thing. And that may be true. But this focus and attention on addressing these cancers is absolutely good news – great news for the people afflicted. And I wonder if you could speak a little bit to how exactly, just on a basic concrete level, how are we as the NCI attacking this group of early onset cancers that hits young people?
Kim: Yeah. So first is just acknowledging that it’s maybe a different disease than in older people. Maybe a variation on the same, but it may be, in some cases, quite different. So we need to understand the biology. So we have existing data and samples that could be mined and we can do new studies to really understand that biology across the continuum.
Right now we're seeing bits and pieces coming on. Colorectal cancer has gotten a lot of attention, but the rise of gastric cancer in particularly young Hispanic women is really dramatic and quite frightening. Prostate cancer in younger African American men, also rising.Kidney cancer is actually one of the – that's my specialty area – kidney cancer is actually one of the ones that's rising most steeply. And kidney cancer is a really interesting cancer because it's very heterogeneous, there are many highly distinct subtypes. And do we know if it's the same flavor when, when it happens in someone in their twenties and thirties as compared to someone in their sixties and seventies. So what is it that's driving [that]?
I think we'll learn some new genetics. I think that we'll learn more about complex genetics as well. I think we'll learn about environmental exposures, too.
I just want to also say that, how we treat these patients is something that we can address. So that we know it, you know, what kind of intensity of treatment to offer. And when do we, or I guess, when and how do we manage the side effects of treatment.
So, we had one investigator funded from the NCI [who] published a study really just looking at: how often were young people offered fertility counseling when they underwent chemotherapy? And you would think that that would be obvious and automatic, but it is not part of our algorithms, and the number was shockingly low. And so we can do better by just talking about it, focusing on it, and putting out some better data and guidelines.
Chuck: So you talked about epidemiology, you talked about supportive care and, and survivorship issues like fertility, you've talked about clinical trials and translational research. So I think this is a great example of how the NCI really covers this from almost a 360 degree level, that one investigator, one pharmaceutical company, one university is just never going to have the capacity to do all of that. It needs that bigger infrastructure.
Kim: Yeah. I'll tell you how this came to be, really. We got together and talked about: where are there areas where we could make a big difference, where everyone could come together? And, you know, within the NCI we're separated into divisions, just like everywhere else.
You know, we have, we have prevention and we have biology and we have cancer control and we have clinical trials and, how could we have some more common, focus area? And this came to the top of everyone's list. When we said, you know, what are the things where we can have the biggest impact? And it was paying some attention to these early onset cancers.
Chuck: So we've talked a little bit about clinical trials. And typically there might be over 200 sites, and maybe all 50 states that are accruing patients to those trials. So wherever someone is listening to this, if they're wondering, does clinical research, do clinical trials, does that apply to me? Is that something I can be part of?
They don't need to get on a plane and go to the, you know, nearest major cancer center. Sometimes it's their community site that's participating in those innovative trials as well. So that's really important, a really important point.
Kim: Yeah, I, I think, you know, accruing patients to clinical trials is the process of inviting them, having them participate in the clinical trial. And there are a variety of different types. Some are very small trials that might enroll 40 or 50 patients, some are 10,000 patients, and everything in between.
So, I think how do you find that clinical trial is one of the highlights that I put on that 24 in 24 list. Which was a pilot of a program called TrialGPT, parodying, of course, ChatGPT. So it's an AI platform to connect people to the clinical trial that might be right for them.
If someone were to imagine, you know, they're faced with a cancer diagnosis, they know that a clinical trial might be their best option, and they're looking to try to figure out where they can go. You can talk to your doctor, and your doctor can help to advise, but it can also sometimes be bigger than that, and very overwhelming.
Even as NCI director, I would not uncommonly get calls from people really kind of desperately searching, saying, I can't tell if the trial at Dana Farber or UCSF or MD Anderson or in my hometown is the one for me. And how do I know what's best? And how do I know what's appropriate? And that matchmaking is much harder than it should be.
So this used AI to do what we all are learning how to do when we, you know, go to a new city and try to find a new restaurant and say, I wanna match to, you know, something in this, this area that meets my dietary needs and is in my price range, right. And we can do that with clinical trials too.
Chuck: Having served, at the NCI as you have, around where we are with the status of clinical trials, the proportion of cancer patients who go on clinical trials, how we're making some progress against that. It's long been a real problem that not enough patients go on clinical trials for us to get the answers that we need.
Kim: Yeah, it's really– there are several challenges here. We've long said that it's under 5% of patients that are participating in clinical trials,the widely quoted number is like 3%. There was a study that came out that had really reliable data that suggested it might be better and more like seven. But that's still not, not close to where we should really be.
So this pilot was based on synthetic patients. So this was not a real live test case scenario yet. But it compared human doctors who were reviewing those cases and matching them to an AI-driven algorithm. And the accuracy was, good for both, almost the same between the humans and the AI algorithm. The speed was much faster for the AI algorithm. They provided a description for why did you choose, and how did you rank the choices. And those were perceived to be very, reasonable, rational and understandable.
And so the first pilot was, really, really quite successful.So now it will move into, you know, advanced, testing. This is, of course, something we don't want to do without really considering safeguards. These are patients' lives at stake. And so, like many other things in the AI territory, I assume that when it becomes a reality, it will be AI with guidance from a healthcare professional. This, this could really dramatically help people get to the right place at the right time.
Chuck: Thank you for that, and I should also point out that, any of our listeners can go to cancer.gov, if they want to read more about this or any of the other factors covered in the 24 areas of progress in ‘24. And I would bet that if we go to cancer.gov, we'll see many more than 24 areas of great progress being made.
Kim: Yes, many many more.
Alicia: Along those lines, Kim, what are some of the other things that you're really excited about? You, you mentioned there were– there were other things that didn't make it onto your initial top list.
Kim: I'm really excited about where some of our data comes from. One of the things that was most fun to learn about this year was the SEER database. So that's a large database that's curated from cancer centers across the country. And this is where we get the data to know what's increasing and what's decreasing. How's mortality looking like? This is our– this is our data set.
It's historically pretty manually put together by cancer registries. And so we spent a lot of time this year, thinking about how we could do this more, more quickly. So, again, we'll talk about AI again. It was using large language models to pull data out of pathology reports. So, so, really making that data more accessible and more real-time for people.
But it’s accessible to everyone. So SEER explorer is a website that anyone can go to if they want to take a look at trends in cancer data. And, it's really valuable for the research community and for many other kinds of decision makers.
Chuck: And that's S-E-E-R for those who are, who are going to be looking that up. And SEER, the database is where we have the data that emerged on the substantial number of lives that have been saved over the course of the past several decades. I think we said 4.7 or so million people in the United States alive today because of progress against cancer, which is something that we love to highlight.
Give us your blue sky projections on, you know, let's talk about the 38 and ‘38, or the 40 and ‘40 when we get 15 years down the road. What do you think it's going to look like for cancer in the United States?
Kim: Oh, I'm incredibly optimistic about where we're going with cancer. The knowledge that's being gained, that's leading to the drugs that are coming is just phenomenal.
If I look back 20 years as a kidney cancer researcher, you know, that– that was a time where we always met someone with metastatic kidney cancer and said, you're going to die from your kidney cancer. Right. We knew that, we were trained to say that so that everyone was on the same page and we had realistic expectations. We were going to be there with them all the way through, but we did not have good effective therapies.
Today, that's not true. We have a suite of therapies that can give people real time. That's meaningful. That's over time become more tolerable, and for some patients will be cured. And we could not say that before. So, you know, when I think to 2038, right, we're, we're ticking off cancers at an incredible rate that we can meaningfully treat and that we can cure.
Chuck: Well, on that note, let us close. It's been a wonderful conversation, with you, to talk about not only the progress of the last year, but also the immense role that the NCI plays in the everyday life of cancer patients and cancer doctors, throughout the United States.
So, Dr. Kim Rathmell. Congratulations on your tenure as the director of the National Cancer Institute. And we look forward to hearing more from you in the future.
Kim: Thank you very much. Really appreciate it.
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Alicia: What an exciting journey through so much progress, so many advances, and really just a fun way to think about all of the success of the NCI.
So thanks for listening to The Good News About Cancer. I'm Dr. Alicia Morgans at Dana Farber Cancer Institute in Boston.
Chuck: And I'm Dr. Chuck Ryan at Memorial Sloan Kettering Cancer Center in New York.
Thanks to Lilly for support of this show.
Our production partner for this series is Citizen Race Car. This episode was produced by Anna Van Dine, with post production by Alex Brouwer.
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Alicia: We’ll be back again soon with more good news about cancer.
