Funding Disparities Affecting Cancers with High Mortality Rates

Podcast Transcript

Dale Shepard, MD, PhD: Cancer Advances, a Cleveland Clinic podcast for medical professionals, exploring the latest innovative research in clinical advances in the field of oncology. Thank you for joining us for another episode of Cancer Advances. I'm your host, Dr. Dale Shepard, a medical oncologist here at Cleveland Clinic overseeing our Taussig Phase I and Sarcoma Programs. Today, I'm happy to be joined by Dr. Suneel Kamath, a medical oncologist here at Cleveland Clinic specializing in gastrointestinal cancers. He is here today to talk to us about disparities in research funding, including work he presented at the recent ASCO conference. Welcome, Suneel.

Suneel Kamath, MD: Thanks for having me, Dale.

Dale Shepard, MD, PhD: Absolutely. To start, maybe you could tell us a little bit about your role here at Cleveland Clinic.

Suneel Kamath, MD: Definitely. Yes. As you mentioned, I'm a medical oncologist. I focus predominantly on GI cancers. In addition to studying novel therapies for GI cancer and other aspects of clinical research, I've also always had an interest in investing the intersection of media and advocacy efforts and how those might affect cancer research and outcomes as well.

Dale Shepard, MD, PhD: A perfect opportunity to be on a podcast.

Suneel Kamath, MD: That's right. Yeah, absolutely.

Dale Shepard, MD, PhD: Well, today we're going to discuss research you presented at ASCO about disparities in both government funding and nonprofit organizations funding research, and how that can affect cancers with high mortality rates. Maybe just start, tell us a little bit about the background behind that and the goal of the study. What led to the interest and what were you hoping to learn?

Suneel Kamath, MD: Yeah, definitely. It actually started quite a few years ago now. It was back when I was in fellowship. I was in a GI cancer clinic and I realized just how common colorectal cancer really is and how little I had heard about it, even as someone interested in oncology and in GI cancer. It got me thinking, "Why is it that I really don't hear anything about this?"

And as I was leaving clinic that afternoon, when I went outside, all of the columns to the front of the hospital were gilded in pink ribbons. Breast cancer this, breast cancer that. I turned on the baseball game that night, pink bats, pink gloves, all of this stuff. And it just got me thinking, like with so many things in life, it must have something to do with money. I started tracking that and it just led to all of this data that we're going to talk about today.

Dale Shepard, MD, PhD: Excellent. Maybe give us a little background. What did you look at and what were some of the findings?

Suneel Kamath, MD: Yeah, so what I did was I started looking at nonprofit groups that have at least 5 million of funding, mostly just to help me find the most groups that I can find. And I just looked at which ones were supporting which causes. And totaled those up over about a four year period because that's what was available last time that I looked.

And then I also included the same type of data from the National Cancer Institute as well, the NCI. And just put them together. Just see in a four year period or in a given year, how many dollars are going to each cancer, both from the NCI and from nonprofit charities. And then the next step was seeing if those things lined up with the incidents and the mortality rates for each of those cancer to see if those really lined up or not. Because as I suspected, they probably don't and certainly found that that was the case.

We definitely found I think a number of very underfunded. Generally speaking, those are in GI, GU and gynecologic malignancies. And that seemed to be pretty true across the board, both for incidents and for mortality rates.

Dale Shepard, MD, PhD: What were the biggest surprises?

Suneel Kamath, MD: Big surprises I think were, I anticipated finding of a number of underfunded cancers that would be rare, sarcomas or head and neck cancer, things like that that are less common. But what I was surprised to find was there were so many that are really, lung cancer, the highest cause of cancer related death was also very underfunded. Colorectal cancer. These aren't ones that I would think a general person off of the street would say, "Oh, I've never heard of that before." I think most have at least heard something about it, but to find that those were also dramatically underfunded was really surprising.

Dale Shepard, MD, PhD: And when you think about, you mentioned incidence and mortality and they're both important. When you think about some cancers are very, very common, but they're not likely to be lethal. And so you think about prostate or something like that in a lot of cases. But then, there are others like pancreas, that the incidence might be lower, but pretty lethal. And so, were there any surprises in terms of that split in terms of focus and research dollars?

Suneel Kamath, MD: Oh yeah, definitely. I think I found that for incidence, there was actually a relatively good correlation. For every additional case, there was of a particular cancer, the dollars pretty well lined up with that. But it was really when I looked at mortality rates that you saw a big disparity. Ones that had, exactly as you mentioned. Pancreatic cancer is a great example. A low incidence rate, but a very high mortality rate. Those are ones that I found that the dollars just didn't line up.

Dale Shepard, MD, PhD: What's next with this particular line of research? Where are you going with it at this point?

Suneel Kamath, MD: What I'm trying to do, I think is this is a message I think that really needs to be shared and spread. I think the data there, but I think it's really getting people to hear it and to broaden that audience. One thing that what I learned from all of this is that right now, we mostly fund causes that things are already going well for. That they're common, but the outcomes are good. People like funding that.

It's easy to have a survivor that had that cancer 30 years ago come to a football game and do the toss and whatnot. And it's a great story. They bring their kids and everything so it's a great story. And so, I understand that is a really great thing to fund and we should. But I think we also need a separate messaging in cancer research and advocacy that is more focused on how can we make progress in other diseases, like pancreatic, like lung, like a number of GI cancers?

Because for those diseases the hope there, it's not a given. We really have to earn it. And we're going to earn that with more money, with more resources, with more time. And until we really do that, I think we're really not going to make progress with those diseases.

Dale Shepard, MD, PhD: It's easy to root for the winning team. What do you think is going to make the biggest impact? I mean, how do we start driving that change? I mean, you're absolutely right. We need to... It's shocking when you look at the number of open clinical trials for really common diseases, like colon and pancreas compared to even rare things. What do you think is going to be the impetus to make the change?

Suneel Kamath, MD: I think the big thing is, yeah, I think just getting the word out that right now, there are a number of diseases that I think we could make progress on if we put the resources into it. As you mentioned, yeah, one of the other findings I found was that there was a nearly perfect correlation between dollars and number of clinical trials out there for a particular disease.

I think that's obvious probably to most people, but I think sharing that with stakeholders that are involved, whether it's people who are on scientific advisory boards for various nonprofits, or for speaking to people involved in the government as far as funding mechanisms are concerned. I think getting that message to them is really important.

I also think especially with a number of these cancers, many of them are actually affecting people who are younger these days. And that might be a nice avenue as far as the media is concerned, because I do suspect there's probably some interplay between these charities and nonprofits influencing government funding patterns. If there's more pressure, more lobbying for those causes, I'm sure there will more dollars that will come from the NCI. I'm hoping maybe these younger people who are affected by these cancers might also be more vocal in public spaces, like social media. And maybe that can start some change.

Dale Shepard, MD, PhD: With the whole thought about social media, what role do you think advocacy groups and things like that can play? Most of these diseases have patient support groups and advocacy groups. Are there things they can be doing to step up, not just awareness, but research dollars and philanthropy?

Suneel Kamath, MD: Yeah, I think, one thing and I go back to breast cancer, just because honestly, maybe 50 years ago, breast cancer was also a very poorly funded thing. It was considered a quote, shameful or embarrassing thing to talk about. I've looked at some clippings of stories of this from newspapers referring to it as chest cancer, because it was not appropriate to talk about at the time. It seems ridiculous now, but it was true.

Dale Shepard, MD, PhD: And of course, it was whispered because you didn't even say cancer.

Suneel Kamath, MD: Right, exactly. Yeah. It was grandma upstairs in the attic or something. And yet, they really turned that whole thing around and they should have. It was something that needed to be talked about, needed to be addressed. I think it's probably a couple things. I think it's just talking about it.

Part of it, I think with the areas I talked about, GI, GYN, these are quote, down there type of diseases. Right. They are areas we don't like to talk about or maybe a little uncomfortable. But I think owning it is similar to how patients with breast cancer did and say, "Hey, yeah, this is my life. And I need this problem addressed. This can't keep happening to other people like me." I think really owning that is really important.

And just being vocal. I hate to saddle patients who are struggling with their own disease with another mission to try to improve outcomes, whatnot. But I do think that's an important part of it is to really be vocal throughout the course of your treatment and then after treatment as well, because they really are the main drivers and the main advocates for this.

Dale Shepard, MD, PhD: And so I guess, the other thing would be social media. And certainly through a lot of these diseases, there are Facebook groups and things like that. That might also be another avenue in terms of clinical trials even, and things like that. Do you see that playing a role as well?

Suneel Kamath, MD: Definitely. I think, Facebook, Twitter, Instagram, whatever's going to come next. Absolutely, I think that's a really big source. It's amazing there in particular, you can never predict which message is going to catch fire. It could be something very simple that I think most people, if you ask who tweeted or posted something that went viral, I think most of them would say, "I had no idea that that thing today would be the one that would happen." I do think the more messaging we put out there from patient advocates and everything, the higher likelihood there is something that really catches on.

Dale Shepard, MD, PhD: Throw lots of things out there and see what sticks.

Suneel Kamath, MD: Exactly. Yeah. Yeah. I think we're familiar with that in research and I think the same is true really, in social media.

Dale Shepard, MD, PhD: What about, so we've talked about funding and clinical research. How has this impacted basic science research? Because a lot of the clinical work come from what we learned in the lab. Do we suspect there are similar problems with basic science funding? And are there similar ways we can try to boost from the bare beginning interest in funding these sorts of diseases?

Suneel Kamath, MD: Yeah. I'm sure. The data that I've collected so far, it's a little challenging to drill down in terms of where dollars are going in terms of they're along the spectrum of basics and translational and clinical research. But I strongly suspect that it does affect what happens in the lab. Especially, I think for junior investigators who often rely on nonprofit, early seed grants and everything to get started, to get that preliminary data, to get a K, or an R1, or something. I definitely think that matters.

One thing that's, well, what's also struck me, just in my practice the last few years is the number of drugs that I see for pancreas, for colorectal, for endometrial. Just looking at the approvals that come out, the number that are truly unique to these diseases is extremely few. Almost all of them were originally developed in melanoma or lung cancer. Even these newer KRAS targeting drugs, a lot of them were developed in lung cancer first and then find their way into the GI or GYN space.

And I think a lot of that does come down to, there's probably inadequate funding for exploring pathways that specifically affect these cancers. I think that's both from nonprofits, but also from the NCI. I think the government's so important for funding early in basic research especially. I think that probably is a major on that need.

Dale Shepard, MD, PhD: And I guess it's disappointing to hear about the correlation between government and nonprofit support and clinical trials, because certainly in cancer, a lot of those clinical trials come from industry. And so, one might think, "Well, maybe there wasn't a need for government or nonprofit support because the industry is taking care of those trials." But it sounds like that's not the case either. And so, it sounds like that's another area where there needs to be maybe a little more advocacy to push for development.

Suneel Kamath, MD: Definitely. Yeah. That was disappointing for sure, to see, I think. Because I would also view government really, one of its main functions should be to look for gaps, what the private sector doesn't currently provide. And ensure that those gaps are filled for needs that are out there. Yeah, I had hoped when I had added in the NCI data, I would find that it was plugging these holes for the diseases that were not funded well, but I actually found that it just followed the exact same pattern.

That's another thing I would hope I think with more knowledge of this evidence, that maybe there would be more thoughts towards that. Not taking away money from diseases that currently things go well, because certainly people do still die of. The best funded I found were breast cancer, leukemia and lymphoma. There's certainly very aggressive cases of all three of these diseases. There's certainly a lot more work to be done there.

I found this is an example of breast cancer. There was almost $4 billion of funding over the four years that I looked at, versus colorectal was about less than a billion dollars. And incidence is about half, but actually mortality wise, there are about 10,000 more deaths from colorectal cancer a year than breast cancer. I think you could maybe justify based on the incidence having slightly less funding for colorectal cancer, but to have that be a 4:1 ratio seems excessive.

Dale Shepard, MD, PhD: It does seem excessive. And I guess, do you think there's a problem because, I mean, I guess because they're common, are they seen as not particularly interesting from a research standpoint by some? And so as you mentioned before, like drugs for KRAS mutations, for instance, or Rec mutations. And we're getting so specialized within diseases. Are we losing sight of what's important? Is that maybe what's driving part of this? That as we take a somewhat common disease and make it a rare disease really by focusing too much, there are really large segments of the population we ignore?

Suneel Kamath, MD: Yeah. I definitely think that's a big part of it. The whole precision medicine explosion has been really exciting for certain diseases, like lung cancer, for example. But you're absolutely right. In colorectal cancer, the subsets we're talking about here are tiny.

MSI has been a great story, but it's 5%, the metastatic population. The KRAS G12C that the current drugs that are out there for, are also probably one or 2% of colorectal. Yeah, I mean part of that is I think it's probably just easier to do that. To find a particular target and make a drug that targets that particular mutation. I think it's a lot harder to find one that is truly efficacious for an entire disease population

Dale Shepard, MD, PhD: And maybe that's where more focus toward common diseases and those individual components that might make them more treatable might be a key, but we have to at least put the time and energy into it. Right.

Suneel Kamath, MD: Absolutely. Yeah. Yeah. And I think the patients are so important for advocating for that type of change to say, "Yeah, it's great." You might look at just thinking about colorectal cancer, again. With the MSI population, with pembrolizumab and the BRAF population having the BEACON regimen there now. I've talked to several patient advocates about those trials, in particular the BEACON one. And they talk about, you see the presentations at ASCO and everything. And they say, "Oh yeah, what a breakthrough. What a major advance." And they say, "Well, the survival difference was about three to four months. I'm 36. Would you think that's a breakthrough at age 36?

And I think I'd say that's a completely reasonable assessment of that presentation. I think to call a three to four month gain a breakthrough. I mean, I understand from an oncologist perspective, BRAF-mutated colorectal cancer is terrible. Anything that works is exciting. But that type of messaging I think is something I hope patient advocates bring up more. And bring up in government forums, bring up on social media to say, "Yeah, this came out last year, but we're not satisfied. This works a lot better in melanoma than it does for me. We need something else."

Dale Shepard, MD, PhD: I mean, it's an interesting point. We started out, you were talking about your interest in how media and social media and things impacts what we do and how we see the world. But it's a great point. Do you think at some level, the hype makes people think that there's not a real need? Because again, for colorectal, certainly BRAF, you talked three or four month advantage, but everything approved before that was about a month and a half survival benefit.

And you're exactly right. Everyone's like, "How's that exciting?" And so, when you see the splashy headlines about a big breakthrough, does that lull us into thinking, "There's not a problem anymore"? And so maybe we need to do a better job, exactly like you said, of messaging. Are we doing this to ourselves by being overly optimistic?

Suneel Kamath, MD: Yeah. I think that's part of it. I think we're so desperate for something in disease like colorectal. As you said, the last approval before pembrolizumab and the BEACON regimen was, I don't know, probably a EGFR inhibitor many years ago. Panitumumab probably.

Dale Shepard, MD, PhD: Regorafenib inhib.

Suneel Kamath, MD: Oh, yeah. Regorafenib probably. Yeah. Which, I mean, that's nothing to celebrate, as you know. But yeah, I think a lot of it when you're so desperate to have something show progress, I think, yeah, there's a tendency to over celebrate that. I think there's also because so much of the messaging in for cancer research and for advocacy about hope. And I think we're so desperate to align with that, that we spin things that are really modest gains, into being a big time breakthrough.

I think if you're a donor. Even if you're the NCI, you would say, "I'm hoping to invest in something and get a return on that investment within a year or two." I can tell you, you're not going to see that in pancreatic cancer. That's going to be a 10 year struggle, but if we don't start that clock with the investment now we're never going to get there. Yeah, I do think our drive to create hope and hope messaging can maybe lull us into a false and of security that this is getting taken care of.

Dale Shepard, MD, PhD: And then, like you said, rooting for the winning team, it makes it more likely you want to do things like study NTRK fusions, where you have great responses rather than what we get with most therapy.

Suneel Kamath, MD: Oh, yeah. And I do think the funding landscape has shifted so much towards pharma. The dollars there are just so much greater. And I think there also, especially if you're thinking about if you're an entrepreneur with a small, single molecule company. I don't know that I would wage or wade into the pancreatic cancer space at this point.

Your likelihood of a failure in that disease is going to be much higher, whereas exactly as you mentioned, making a seventh generation NTRK drug, or a ninth generation EGFR drug, or whatever, you're much more likely to get a bang for your buck. Either your drug works or you get acquired by another company. I think all of that, the rooting for the winning team absolutely, is a very challenging hill to climb. But it's definitely one we need to.

Dale Shepard, MD, PhD: Definitely something we need to address. It's been great insight. Dr. Kamath will be joining us again on the Cancer Advances podcast to discuss young onset colorectal cancer outcomes and disparities associated with outcomes for patients with colorectal cancer. In the meantime, appreciate you being with us today.

Suneel Kamath, MD: Thanks for having me, Dale.

Dale Shepard, MD, PhD: This concludes this episode of Cancer Advances. You will find additional podcast episodes on our website, clevelandclinic.org/canceradvancespodcast. Subscribe to the podcast on iTunes, Google Play, Spotify, SoundCloud, or wherever you listen to podcasts. And don't forget, you can access real time updates from Cleveland Clinic's Cancer Center experts on our Consult QD website at consultqd.clevelandclinic.org/cancer. Thank you for listening. Please join us again soon.