How are cancer centers in two rural states—Kansas and South Carolina—weathering the challenges of Trump-era belt-tightening and uncertainty? Their directors weigh in on The Cancer Letter Podcast.
“The rate of change in what’s coming at us is truly unprecedented,” Roy Jensen, director of The University of Kansas Cancer Center, said to The Cancer Letter. “It’s tough enough for young investigators right now, who if you’re trying to get a cancer grant from the NCI or looking at single-digit pay lines, and then to have all of this uncertainty around indirect costs, and what’s going to be funded, and what words I can’t use in my grant because they may get it flagged—that just doesn’t help the situation.”
Contrary to the beliefs of some at the White House and the Department of Government Efficiency, there’s not much fat to be trimmed when it comes to cancer research.
“There’s not a lot of waste, fraud, and abuse in a system where only one out of every 11 or 12 grants get funded,” said Jensen. “You have to scratch and claw, and really put forth your best effort, and bend over backwards, practically, to get funding for your ideas. And there’s a lot of ideas that are really, really good that are not getting funded. And that’s what keeps me up at night.”
In the second installment of The Directors, a new series on The Cancer Letter Podcast, we asked Raymond DuBois, director of the Hollings Cancer Center in Charleston, South Carolina, and Jensen of KU, what being a cancer center director is like right now.
The level of uncertainty today is like nothing DuBois has ever seen.
“This is something completely different, because we’re getting so many signals from so many different areas, and they’re all creating a lot of anxiety, especially among the younger faculty, the students and the postdocs,” said DuBois. “They’re really having a hard time processing all this information. And I think everybody’s staying up all night now, because they’re worried about their future, their future careers. It’s always been tough in the cancer research field to get funded, but now we don’t want it to be impossible. That would be a tremendous amount of doom and gloom. I think that as this evolves, hopefully reason will prevail, but we’re just going to have to ride through this and not give up, and try to see if we can get to a point where we can continue the mission.”
This episode is available exclusively on The Cancer Letter Podcast—on Spotify, Apple Podcasts, and Youtube.
The Directors is a monthly series of interviews focused on the problems that keep directors of cancer centers up at night. The series began in February during Black History Month (The Cancer Letter, Feb. 14, 2025).
This episode features one discussant:
- Otis Brawley, Bloomberg Distinguished Professor of Oncology and Epidemiology at the Johns Hopkins University Sidney Kimmel Comprehensive Cancer Center, and co-editor of the Cancer History Project.
This episode is sponsored by the American Society of Clinical Oncology. ASCO plays no role in the editorial direction of this podcast.
Some highlights:
Indirect costs: “Not an apples-to-apples comparison”
Indirect costs—reimbursements provided to institutions in addition to awarded federal research funds—are critical for keeping medical schools and research institutions afloat in the U.S. For decades, variabilities of these costs have drawn criticism across the political spectrum (The Cancer Letter, Feb. 10, 2025).
Said Jensen:
The latest scuttlebutt is there’s probably not going to be much enthusiasm in Congress to change indirect cost rates for this budget year.
But I think those cards are certainly on the table for next year. I think there’s probably a short term reprieve there.
It’s an extraordinarily complicated issue that appears to be being led by people that don’t fully appreciate all of that complexity. As witnessed by the fact that they say these private foundations, their indirect cost rate that they allow is much lower.
So, why doesn’t the federal government get that same rate?
Frankly, it’s an apples-and-oranges comparison. A lot of the private foundations allow you to count things in the direct costs that for NIH funding, you have to count as an indirect cost. So it’s not a fair comparison to say ‘such and such foundation gets 10%–for our institution it’s 55%, how can this be?’
Well, it’s because it’s not an apples-to-apples comparison.
One of the biggest issues is the single digit pay line for cancer center grants. It is crushing for our young scientists. And to allow them to establish a career, it’s just really, really tough.
Roy Jensen
DuBois said the funding origins of the private foundations and NIH indirects are not comparable, the foundations being created from mostly benefactors and philanthropists, more interested in funding “hardcore science” than infrastructure.
“I think that’s why they really moved in that direction. They sort of piggybacked on the NIH indirects.They knew some of that infrastructure was there and could be utilized more broadly,” DuBois said.
It’s simply the way those two funding sources evolved, he said.
Said DuBois:
I can give you a really good example. We have two young investigators doing a CAR T cell trial. We have our own GMP facility, so we can make our own CAR T cells right there in Charleston at the Hollings Cancer Center.
We’ve been focusing on B-cell lymphomas because we have a strong interest group in that area. That facility is costly, to tell you the truth.
One of our investigators got a very large R01 grant, and the indirects from that, at our rates around 51, 52% are helping to cover the cost of growing up a batch of cells, infusing them in a patient, and then waiting three weeks to see how that’s going to go.
Most of the people that are in that trial could not afford CAR T cells. They don’t have insurance, they don’t have coverage. They’re on their last legs in terms of treatment for B-cell lymphoma.
Today was our 12th patient so far. 11 out of 12 patients are in complete remission after three weeks.
So, they really got a new lease on life. If we didn’t have a facility to make those cells, they would not have gotten that treatment.
It’s life changing. So, people are asking me, why do you worry about the indirect cost? Why is that a big deal? Well, you’ve got to have all the right equipment. It has to be all the SOPs, you have to follow all the protocols from the FDA.
We’re still in an FDA trial phase. It’s just a lot of regulators and regulations you’ve got to cover. We’re just about to get FDA approval—if the FDA is still doing that sort of thing.
This will be a big game changer for us because we can produce these cells at about a 10th of the cost of commercially available sales.
We’ve already started discussions with Blue Cross, and they’re very interested in contracting with this for patients that don’t have the kind of coverage that can pay $500,000 of treatment.
The future of COE and health disparities research
Community Outreach and Engagement is an NCI program that informs cancer disparities shaped by every cancer center’s catchment area. The purpose of COE is to translate science into health interventions (The Cancer Letter, Feb. 14, 2025).
Jenson pointed out that DEI and health disparity research are not the same thing, and is concerned about the current administration confusing the two.
I think everybody’s staying up all night now because they’re worried about their future, their future careers.
Raymond DuBois
“I think that is a real threat,” he said. “Cancer is increasingly becoming a disease of disparities.”
Medicaid is a key component of addressing health disparities, said DuBois. The presentation of colorectal cancer is happening in younger and younger patients now, he said, and that’s a health disparity critically in need of focus screening research.
“Without Medicaid many of them won’t even be able to get a clinic visit, at least in our state,” said DuBois. “So we do have the federally supported clinics, and those are helpful for sure because they’re regionally located, but without Medicaid, that would really be even more health disparities.”
Education, adequate care: the “great equalizers” of cancer mortality
Commenting on the discussion, our discussant, former chief medical and scientific officer and executive vice president of the American Cancer Society, Otis Brawley, talks about the gravity of health disparities research, and how the future of cancer centers revolves around COE.
“They [the directors] said something very, very important, and that is that we have developed a great deal of knowledge of cancer, and the opportunities are tremendous,” said Brawley. “We just need the resources today. I think we need to capitalize on the last 55 year investment in cancer research.”
Misinformation around DEI isn’t helping the cause, Brawley noted, pointing out that people who have benefited most from DEI are women and white people, not Blacks or Hispanics.
Said Brawley:
DEI is about including everybody and taking care of everybody’s problems.
One of the things that we happen to be doing at COA a lot nowadays is looking at inclusion of poor whites and people from middle America and of older people in clinical trials. That’s an inclusion issue.
It is a fact that there is a huge disparity in breast cancer death rates among Black women. I tend to give people numbers, even though folks don’t like numbers:
The death rate of Black women from breast cancer in the United States is 28 per 100,000 per year. But the death rate for Black women in Massachusetts is 20 per 100,000 per year. Almost a third less.
It is also a fact that there are 11 states in the United States where white women have a higher death rate from breast cancer than Black women in Massachusetts. I use that as an argument that we need to figure out how to get adequate care to white people.
That’s a DEI issue.
Our North Star needs to be preventing people from dying. I don’t hear that enough in our politics.
Otis Brawley
COE on the other hand, tackles health disparities.
“There are white people in middle American states who are dying excessively, and I have proof that it’s unnecessary deaths,” Brawley said. “That’s a COE issue.”
Defining these issues and disparities is necessary for developing solutions for getting adequate care to all people in the appropriate catchment areas, Brawley said.
Said Brawley:
The future of cancer centers revolves tremendously around COE.
You can look at the fact that college educated people, be they black, white or other, do far, far better than high school educated people who actually do better than high school dropouts.
Education is an amazing equalizer in terms of cancer death.
The long and short of it is of the 600,000 deaths that occur every year in the United States, about 132,000 would go away if we did everything optimally and got rid of the disparities. This is not a new drug or a new treatment. This is getting everything that everybody should be getting from tobacco control, smoking cessation to appropriate treatment.
132,000 people would not die every year of cancer. That is quantifying the disparity.
Then, we want to qualify it. We found out 80,000 of the 132,000 are white people. The largest group of people who suffer from cancer health disparities are white Americans.
If we stop doing disparities research, if we stop doing community outreach and engagement, we will actually see disparities increase.
Ironically, if we get rid of disparities research, we won’t be able to document that disparities are increasing, but we’re gonna see a larger number of people die.
See, I like to remove the politics and just talk simply about whether people die. Yes or no. I’m very binary about that. You give people adequate care and they tend not to die.
Transcript
Paul Goldberg: Welcome to The Directors. It’s a podcast of The Cancer Letter. This is a fantastic time to be a journalist, very interesting. What’s it like to be a director of a cancer center now in March 2025?
Raymond DuBois: Well, I can start off. My name is Ray DuBois, the director for the Hollings Cancer Center in Charleston, South Carolina.
And we’re a fairly rural state. We have a very large underserved population there. And I think it’s great to be a cancer center director. I mean, the reason we do what we do is really not for our own personal benefit. It’s really for the benefit of people in our state who really need our care.
They need the attention. And when we can take one of these cases on and really change their life course, it is the most rewarding thing that I’ve ever done in my life.
Roy Jensen: I think that my thoughts on this reflect what my mentor and Ray’s mentor, Hal Moses once told me. He said, “I’ve been a department chair, I’ve been a center director and had many other roles in academia.” And he said, “There’s nothing like being a cancer center director.”
And it’s the best opportunity you have, I think, and obviously what Hal thought as well, that it gives you an opportunity to make a real impact, to be able to acquire and deploy resources in ways that really make a difference, just like Ray said.
And I can’t think of any other job in academia that comes anywhere close to providing the amount of job satisfaction that you get out of engaging those behaviors.
Raymond DuBois: Paul, I’d like to add to that, because I’ve actually been a dean, I’ve been a provost, I’ve been director of a biomedical institute in Arizona. And again, I think this is the most rewarding job that I’ve ever had.
Paul Goldberg: So, in March 2025, the dawn of the Trump era, what’s keeping you up at nights?
Roy Jensen: I think a big part of the issue that we have right now is uncertainty. And Ray and I have been around long enough to see things ebb and flow, but I think the rate of change in what’s coming at us is truly unprecedented.
And it’s tough enough for young investigators right now who if you’re trying to get a cancer grant from the NCI or looking at single-digit paylines, and to have all of this uncertainty around indirect costs and what’s going to be funded, and what words I can’t use in my grant, because they may get it flagged—that just doesn’t help the situation.
I think the other thing I guess we can proudly point to with a single-digit reward rate is that there’s not a lot of waste, fraud, and abuse in a system where only one out of every 11 or 12 grants gets funded.
You have to scratch and claw, and really put forth your best effort and bend over backwards practically to get funding for your ideas. And there’s a lot of ideas that are really, really good that are not getting funded.
That’s what keeps me up at night, probably the biggest thing.
Raymond DuBois: This is Ray. I agree with Roy, for the most part. I look back when I moved from Vanderbilt to Houston right before the 2008, 2009 recession, and as soon as I got there, they said we had to lay off 524 people.
And I thought it was the end of the world, basically, Paul. And that was just one little, sort of, blip. We did it. We hired most of them back within six months, to tell you the truth. So that was a quick recovery.
This is something completely different, because we’re getting so many signals from so many different areas, and they’re all creating a lot of anxiety, especially among the younger faculty, the students and the postdocs. They’re really having a hard time processing all this information.
And I think everybody’s staying up all night now, because they’re worried about their future, their future careers. It’s always been tough in the cancer research field to get funded, but now we don’t want it to be impossible.
So, that would be a tremendous amount of doom and gloom. I think that as this evolves, hopefully reason will prevail, but we’re just going to have to ride through this and not give up and try to see if we can get to a point where we can continue the mission.
Paul Goldberg: Maybe we should talk about indirect costs. How is that affecting you?
Roy Jensen: So, we retain a firm in Washington to keep our finger on the pulse of what’s happening there.
And we just had a call today with these folks, and the latest scuttlebutt is there’s probably not going to be much enthusiasm in Congress to change indirect cost rates for this budget year. But I think those cards are certainly on the table for next year.
So, I think there’s probably a short-term reprieve there.
But it’s an extraordinarily complicated issue that appears to be being led by people that don’t fully appreciate all of that complexity, and as witnessed by the fact that they say, “Well, these private foundations, their indirect cost rate that they allow is much lower. And so, why doesn’t the federal government get that same rate?”
Well, frankly, it’s an apples-and-oranges comparison, and a lot of the private foundations allow you to count things in the direct costs that for NIH funding, you have to count as an indirect cost.
So it’s not a fair comparison if you say, “Well, such-and-such foundation gets 10% and for our institution it’s 55%, how can this be?” Well, because it’s not an apples-to-apples comparison, frankly.
Raymond DuBois: Yes, and just to go along with that, Roy, the foundations were created from a totally different source of funds, mostly benefactors and philanthropists, and they’re more interested in funding the hardcore science, the discovery than the infrastructure.
So, I think that’s why they really moved in that direction. Also, they sort of piggybacked on the NIH indirects, so they knew some of that infrastructure was there and could be utilized more broadly. So, I think it’s just the way the two funding sources evolved and it’s definitely not apples and apples.
I can give you a really good example here, Paul.
We have two young investigators doing a CAR T-cell trial. We have our own GMP facility, so we can make our own CAR T cells right there in Charleston at the Hollings Cancer Center.
And we’ve been focusing on B-cell lymphomas because we have a strong interest group in that area. So, that facility is costly, to tell you the truth. I mean, one of our investigators got a very large R01 grant, and the indirects from that, at our rates around 51, 52%, are helping to cover the cost of growing up a batch of cells infusing in a patient, and then waiting three weeks to see how that’s going to go.
And most of the people that are in that trial could not afford CAR T cells. They don’t have insurance, they don’t have coverage, and they’re on their last legs in terms of treatment for B-cell lymphoma.
And today was our 12th patient. So far, we have 11 out of 12 patients that are in complete remission after three weeks. So, they really got a new lease on life.
And if we didn’t have a facility to make those cells, they would not have got that treatment. Like I said, it’s life changing. So people are asking me, “Why are you worried about the indirect costs? Why is that a big deal?” Well, you’ve got to have all the right equipment.
It has to be all the SOPs, you have to follow all the protocols from the FDA. We’re still in an FDA trial phase.
And it’s just a lot of regulators and regulations you’ve got to cover. We’re just about to get FDA approval, if the FDA is still doing that sort of thing.
And this will be a big gamechanger for us, because we can produce these cells at about a 10th of the cost of commercially available cells, and we’ve already started discussions with Blue Cross, and they’re very interested in contracting with this for patients that just don’t have the kind of coverage that can pay $500,000 of treatment.
Paul Goldberg: Roy, do you have any specific examples like that?
Roy Jensen: I think we just met with a donor today that provided $10 million to expand our GMP facility.
Without that philanthropic support and without indirect costs to cover a lot of these shared resources, you simply could not do the research that’s taking place.
So, one of the most concerning things about this whole deal is that the people directing this conversation currently in Washington act like this is a new problem.
And in truth, it goes all the way back to the 1950s, when they decided that funding things through indirect costs was the fairest way to do it, because they could collect data over a large amount of the research that’s ongoing at an institution and understand what the real costs were.
It’s not just pulled out of thin air. The institutions and the government negotiate these rates based on the actual costs of what it takes to do the full extent of the research.
So, it’s kind of concerning that all of that experience, they just want to wipe away and say, “Well, that doesn’t mean anything.” Well, it means everything because it’s the actual receipts on what it costs to do what we do.
Paul Goldberg: I’ve been covering this issue since the 1990s, and it really goes back in other areas of US government to 1940, to the war effort.
But yes, the first story I see in The Cancer Letter on this very issue in terms of cancer is in 1979. So, it’s an old issue, and it was also bipartisan. But perhaps the answer might be to spend that year figuring out how to make the system more transparent, because it’s pretty opaque.
It’s something they don’t talk about in polite company, but why not? Why not? I’m just opining, which I have no right to do.
But getting back to things that keep all of us up at night, and one of the things that I’m really truly worried about, since we’re talking about the algorithms and the dreaded words, is community outreach and engagement.
Because what if one of these guys working for Mr. Musk decides that COE means something other than what it means—what happens?
Raymond DuBois: Well, I can say that for us in South Carolina, our catchment is the whole state of South Carolina, because we’re the only NCI designated center in the state, and that’s 46 counties, and we have geospatially mapped all of our patients.
And using a heat map, we’ve taken care of everybody in every one of those counties at certain points in time. And we have screening programs, patient education programs, we have vaccination programs, we have all of these things.
And some of the communities that are in the most need, and we can tell who those are, because of our geospatial mapping of outcomes and mortality, morbidity and different types of cancers.
We send mobile vans there on a very regular basis to not only just vaccinate for HPV, but we’ve been also vaccinating for just the regular childhood diseases, like measles and others, because there’s no other way for them to get those vaccines other than with our mobile units.And it’s really helped people attend school when they need to and all this other stuff because they qualify for the vaccination plan.
So, it’s one of the things that you feel so good about because the philanthropic support comes in at a good level for this. People really do want to support this with donations and other things, and we can talk to these families and others.
We’re very integrated into all the AME churches in the state of South Carolina. And they, frankly, really depend on us.
Before we started coming along, when the cancer center was established in 2009, they really didn’t get much attention for their cancer problems. And right now, with all of our database management, we’re trying to look at changing mortalities, morbidities and all of those things over time as the NCI center has really integrated into the state.
Roy Jensen: Yeah, I totally agree with Ray. I think it’s an essential concept, and it is probably Henry Ciolino’s greatest legacy was adding that component into the P30 grant.
And it’s a way to help assess how connected the cancer center is to the people that it serves. And I think that there could be tweaks to how that assessment is done and all of that, but it’s critical that that issue is part of the site visit and the assessment process because after all, that’s what it’s all about.
Paul Goldberg: But what’s really interesting is in both your states, as in the United States as a whole, the largest absolute number, or actually the largest proportion of the underserved are white.
Raymond DuBois: Yes, and these are very low-income individuals that are in areas where there’s just not a lot of opportunities to move up the ladder.
And for one reason or another, their families have just stayed there for several generations and it’s really hard for them to… I mean, I can’t even imagine that they would go join a trial at MD Anderson or anything like that.
A lot of them, we have to have gas corps cards and other things to help support getting them to the clinic and back. And also, when they need a scan or something during their treatment, we have to help with those kinds of things.
We also help with groceries and other things so that they’re nutritionally balanced during the time they’re getting their treatment. And I don’t know how just the general US citizen if they understand what the need is there and how important it is.
Roy Jensen: Yeah, just to give one example, we have a group from our COE office that is heading to the western part of our state on Monday, and it’s a five hour drive.
Paul Goldberg: Dodge City? Garden City?
Roy Jensen: Well, actually it’s out to Goodland.
Paul Goldberg: I’ve been there!
Roy Jensen: Those folks, they think nothing of driving an hour and a half to go get groceries one way.
And we have about 25% of our catchment area that live in rural zip codes. So, as you point out, it’s a huge part of our population. And you can’t use the same mechanisms to reach them that you go after Johnson County soccer moms. It just doesn’t work.
Paul Goldberg: Well, COE is a three letter acronym, DEI is a three letter acronym. And I’m just wondering, just fearing that somebody might confuse them, and that is my biggest fear after having covered both COE and DEI and liking both of them, to be fair.
Raymond DuBois: Well, I think it’s the onus on the directors to make sure that people understand what that’s all about.
We present this to our board on a regular basis. We have a lot of public events that go along with our bike ride and our Swim Across America and all these other things.
We always educate people about why this is so important and what impact it’s having. I think there’s a pretty good understanding of how that community outreach works, and it’s not really…
It’s just focused on areas of need, and that these are in these rural areas of really low salaries and low socioeconomic status.
Roy Jensen: So, Paul, I hadn’t thought about these folks deciding that COE was verboten, but I tell you one thing that I am very concerned about is that they confuse health disparities research with DEI.
And I think that is a real threat.
And as Ray is well aware, and I’m sure you are too, Paul, cancer is increasingly becoming a disease of disparities. And if we don’t specifically address populations at risk, like, for instance, young African American women being diagnosed with triple-negative breast cancer at much higher rates than almost any other ethnic group, and if we’re not doing research to try to understand that and to really develop therapeutic and prevention and screening approaches to deal with it, then we’re not meeting our mission.
Raymond DuBois: Yes, I agree with Roy—that is a very important distinction.
And now, even in our younger people, not even dependent on the race in particular, there’s a big increase in colon cancer and other cancers, and they really aren’t getting the attention as good as they should in terms of how to do screening, where to go and make sure that when they do turn 45, they start looking into this.
But that younger presentation of colorectal cancer is really taking off right now, and there are probably a lot of reasons for it. But that’s a health disparity we really need to focus on and do more and appropriate screening for.
Paul Goldberg: What about Medicaid? There’s a non-zero chance that Congress and this administration will try to cut Medicaid and Medicare, for that matter. What would that do?
Roy Jensen: I think that would have devastating impact. And folks on Medicaid already have a lot of strikes against them, and this very well could be the straw that breaks the camel’s back as far as our ability to help these folks out and get them the appropriate healthcare for them.
Raymond DuBois: Yes, I think that would really, not only just on cancer, Paul, because these individuals need to have their blood pressure checked and cholesterol and all the things that are normally looked at on a regular basis.
And without Medicaid, many of them won’t even be able to get a clinic visit, at least in our state. So we do have the federally supported clinics, and those are helpful for sure because they’re regionally located. But without Medicaid, that would really be even more health disparities.
Paul Goldberg: Another thing that kind of scares me quite a bit is imagining the world without the [NCI] Cancer Centers Program. Can you imagine what happens if NCI says, “Well, we don’t really want to do this anymore”?
Raymond DuBois: I mean, I’ll just be the first to say it. I just can’t imagine it, especially at least in the Southern states that we’re sort of associated with in the South, like UAB has an NCI-designated cancer center, Georgia has one, North Carolina has three, Florida has a couple.
I mean, these are critical in these Southern states. I can’t believe that our local politicians would really let that happen if they were coming towards them to make a decision on it.
Paul Goldberg: Roy, what do you think?
Roy Jensen: I agree. I have a hard time believing that we would ever get there. And once again, we’ve got 50-plus years of data showing that NCI cancer centers have made a huge difference in terms of cancer morbidity and mortality, and there’s multiple studies showing that, frankly, the outcomes of patients being treated at NCI centers do significantly better.
And it’s not subtle. So, I think that that would cause a firestorm.
Paul Goldberg: Are you talking to…
Raymond DuBois: The other thing, Paul, with some of the clinical trials, these phase I trials, there are these unbelievable drugs, mostly immunotherapy, but others, these targeted agents where, I mean, people really have a complete turnaround in their disease when they’re tried on these research trials, and none of that is going on in our community oncology clinics or community hospitals where cancer patients are being seen.
I mean, we’re really the main clinical research entity in the state. So, that whole component of new drugs and medicines, first-in-man, all that stuff, I don’t know where people would get that if the cancer centers went away.
Paul Goldberg: I guess cancer centers would become some kind of, if not for-profit entities, but entities that become more commercial. But they could probably still self-designate. I mean, there could still be some kind of a designation arm.
Raymond DuBois: Well, they do that now.
I mean, a lot of people call themselves cancer centers, but they certainly don’t meet all of the criteria that Roy and I have to go through when we get examined every five to seven years.
Paul Goldberg: Are you talking to your congressional delegations?
Roy Jensen: We are. And I think that that’s an important dialogue for all cancer center directors to engage in. Some have a better access than others in terms of what they’re allowed to do.
But our congressional delegation is pretty darn proud of the service that we provide to their constituents, and they have played an important role in helping us achieve our success.
So, it’s a mutually beneficial relationship, because they love to tout the things that they’ve done for us, and, frankly, it’s made a huge difference. So, we’re happy to sing their praises around those things.
Paul Goldberg: Ray, are you talking to your congressional delegation?
Raymond DuBois: So, I think every center are connected into especially the House and the Senate members from the state and people like that.
Of course, over the years we’ve gotten to know some of these people pretty well because of all the Hill visits and other things. So, that actually, Roy, was a great idea, because once you have a relationship like that, people know you’re just not crying wolf or whatever, when you come in and talk to them. I think there is some concern.
It’s just a very strange time in the American politics and the evolution of our country where there’s just so many things going on all at once that are hard to process and understand and react to logically.
Paul Goldberg: Well, everything seems to be happening all at once, but I wonder what happens once the judges create more time.
Raymond DuBois: Well, I think it’ll probably, and Roy and I have talked about this, it’ll probably be connected with the passing of a bill for funding the country, because that’s where all of the resources are to make things happen.
So, these things will be hammered out when the budget is really on the table, on the line, and that’s coming up pretty soon, so we’ll see where people stand.
Paul Goldberg: So, what are your thoughts about what the NCI director, what kind of a person are you looking for, or what would be your advice to the next NCI director?
Roy Jensen: I thought that Dr. Rathmell had really launched a number of critically important initiatives, and more important than any of that, I think she had done a great job of engaging with and leveraging the cancer center directors, frankly.
And I think that that it is a great resource for the country, and I was sad to see when she stepped down. It’s a huge, huge job. There’s a lot of issues.
I think my personal opinion, one of the biggest issues is the single-digit payline for cancer center grants. It is crushing for our young scientists. And to allow them to establish a career, it’s just really, really tough.
And at the same time, there’s never been more opportunity and more potential progress in cancer. And Ray and I see that every day with our patients. It’s like we both started off back at Vanderbilt and a non-small cell lung cancer patient come in Stage 4 and you kind of pat them on the hand and offer support, and that was about all you could do back in the day.
And now, a significant percentages of these people are living years and years. There’s a patient that I’m familiar with that’s been alive about seven years with Stage 4 lung cancer.
Raymond DuBois: Yes, it’s amazing. It really is.
Roy Jensen: It’s astounding.
And I’ve got another patient who’s had 27 brain mets at diagnosis, and she’s alive six years later.
I mean, it’s spectacular what is happening with immune checkpoint therapy and CAR T therapy, and all of these other advances. And frankly, our limitation right now in terms of making additional advances is a lack of resources.
It’s not a lack of good ideas. I think 40 years ago, people were kind of scratching their head about, “What’s the next direction we need to take to make an advance?”
And that’s not the case now. I think there’s a lot of avenues available for us to make significant progress, but we need the resources to do the trials and to move the field forward.
Raymond DuBois: And I can tell you a similar story, Paul.
When I started working with the team, colon cancer patients, all we had was 5-FU. That’s all we had to treat them. It didn’t hurt them, but it really didn’t help them.
They mostly just died from their cancer on a regular course. But now, with what Roy’s talking about, all this immunotherapy, all this targeted therapy, we know that there are many different types of colon cancer.
The ones who have the microsatellite unstable, those 15% of patients, they respond really well to immunotherapy and we’re curing those where we would’ve never seen that back when we started.
So, I know the public has a fresh view of things, but if you saw all the patients who struggled through this disease when we were just in the ’90s really, not medieval times, and the situation now is just so different.
But we have only scratched the surface. There’s a lot more that we can do with combinations and other new targets that are emerging with all this technology, and we don’t want to inhibit that from happening.
Paul Goldberg: Is there anything we’ve missed, anything we need to talk about?
Roy Jensen: I just hope that the focus gets back to making progress for our patients. And like I said, I don’t think there’s a lot of waste, fraud and abuse out in cancer research.
The issue is, we don’t have the resources to pursue every promising avenue that is apparent to all sorts of folks. It’s not like there’s one center or one group that’s got the answer.
There’s a lot of people that can contribute to this fight, and there’s a lot of fronts out there that are waiting for additional progress. We’ve talked about colon cancer, we’ve talked about non-small cell lung cancer.
We could also say a lot of great things about the story in melanoma is phenomenal. But on the other hand, brain cancer, pancreatic cancer, and a couple of others, it’s a tough, tough slog, and we need to be able to go after them as well.
Raymond DuBois: I agree.
Paul Goldberg: Well, thank you very much for finding the time to talk with me. Thank you, Roy. Thank you, Ray. Also our thanks go to our sponsor for the podcast, The American Society of Clinical Oncology, ASCO.
Roy Jensen: All right. Well thanks, Paul, for having us on.
Paul Goldberg: Thank you.
Raymond DuBois: Thanks for doing it. Thanks for keeping the information flowing.
Paul Goldberg: Well, Dr. Brawley, thank you very much for finding the time to join us on The Directors as a discussant. So, as a discussant, what did you hear? What were some of the more remarkable parts of the conversation?
Otis Brawley: Well, first, you’ve got two really wonderful guys who happen to run great cancer centers.
And by and large, I agree with much of what they said. I would note you were talking about the issue of cancer centers and the future of cancer centers and the politics.
Dr. DeVita, when I was young at the NCI, used to be fond of saying, “Every cancer center has at least one congressman and two senators.”
I think that’s true, and I’m hoping that’s going to save the Cancer Centers Program now.
They said something very, very important .and that is that we have developed a great deal of knowledge of cancer and the opportunities are tremendous. We just need the resources today. I think that’s true. I think we need to capitalize on the last 55-year investment in cancer research.
The one thing I’m sure they would agree with that they didn’t say is I wish the rhetoric right now was much more concerning about promotion of health, promotion of good health, and keeping people from dying. I don’t hear that in the politics today, and I wish I did hear that.
And indeed, I’m a little bit pessimistic about our future, because I don’t hear rhetoric that is concerning about the health of individuals.
One thing that was said that I think is very important in this political situation, when we talk about DEI, and I’m still a fan of DEI, I point out that people who’ve benefited most from DEI are women, and actually whites, not Blacks or Hispanics, or so forth.
I would also say I’m a very big fan, of course, of COE, and I think that the future of cancer centers revolves tremendously around COE.
Paul Goldberg: Let me interrupt you for a moment on the subject of COE, just to focus on this, because that’s kind of crucial. COE and DEI are three-letter acronyms, and I’m worried that some guy with a chainsaw might confuse them.
Can we just go back to the basics and talk about COE? I think everybody knows about DEI.
Otis Brawley: All right, well, I actually think everybody doesn’t know about DEI, because I hear a lot of things about DEI that are not true, but let’s talk about COE.
Paul Goldberg: In that case, go for it.
Otis Brawley: All right, all right.
DEI is about including everybody and taking care of everybody’s problem. One of the things that we happen to be doing at COE a lot nowadays is looking at inclusion of poor whites and people from Middle America and of older people in clinical trials. That’s an inclusion issue.
It is a fact that there is a huge disparity in breast cancer death rates among Black women. I tend to give people numbers, even though folks don’t like numbers.
The death rate of Black women from breast cancer in the United States is 28 per 100,000 per year. But the death rate for Black women in Massachusetts is 20 per 100,000 per year, almost a third less.
It is also a fact that there are 11 states in the United States where white women have a higher death rate from breast cancer than Black women in Massachusetts.
I use that as an argument that we need to figure out how to get adequate care to white people. That’s a DEI issue. There are white people in Middle American states who are dying excessively, and I have proof that it’s unnecessary deaths.
That’s a COE issue. How do we get adequate care to people who need adequate care?
Part of COE, we’ll go to COE now, is to define these issues and to define these disparities, and to define what some of the solutions are. And then part of COE and the cancer center should be applying those issues in the area, the catchment area we call it, the area that they serve.
Paul Goldberg: Well, over the past couple months, I’ve been quoting a paper of yours about who is the most underserved, which ethnic group in America is most underserved and—ta-da!
Otis Brawley: Yes. I hate to go into race, I hate to go into socioeconomics. I like to stay at the level of human and every human deserves adequate care, be it prevention or risk reduction, appropriate screening, and there’s a lot of waste there because there’s a lot of inappropriate screening, and appropriate treatment, there’s a lot of waste there in inappropriate treatment, and I wrote a book about that a few years ago.
One of the things that I did in my swan song as I was leaving the American Cancer Society is I worked with Ahmedin Jemal and the wonderful epidemiologists who are there to actually quantify health disparities in the United States.
There are a number of ways we can do that.
You can look at the fact that death rate from cancer in Utah is 125 per 100,00 per year. The death rate in Kentucky is 195 per 100,000 per year.That’s the highs and lows among the states.
The average, by the way, is about 170 per 100,000 in the United States as a whole. You can look at the fact that college-educated, be they Black, white or other, do far, far better than high school educated people, who actually do better than high school dropouts.
Education is an amazing equalizer in terms of cancer death rate.
Well, you can look at all of these things and start doing calculations and do some ifs.
If everybody had the optimal, how many people would not die? And the long and short of it is that of the 600,000 deaths that occur every year in the United States, about 132,000 would go away if we did everything optimally and got rid of the disparities.
This is not a new drug or a new treatment.
This is getting everything that everybody should be getting, from tobacco control, smoking cessation to appropriate treatment, getting everybody everything, 132,000 people would not die every year of cancer.
That is quantifying the disparity.
Then we want to qualify. We found out 80,000 of the 132,000 are white people.
The largest group of people who suffer from cancer health disparities are white Americans.
Paul Goldberg: Well, that’s a point to be bringing up right now. It feels kind of bad and a little bit perverse that it matters, but it does matter at the moment it seems.
Otis Brawley: Oh, absolutely. Absolutely. A lot of this movement that we see today is based on race, based on racial hatred. And there are people out there who are getting screwed, and they actually don’t know they’re getting screwed, and they’re called white people.
Paul Goldberg: What happens, just as a thought experiment, what happens if NCI is mandated to get rid of COE and disparities research?
Otis Brawley: If we stop doing disparities research, if we stop doing Community Outreach and Engagement, we will actually see disparities increase.
Ironically, if we get rid of disparities research, we won’t be able to document that disparities are increasing. But we’re going to see a larger number of people die.
You see, I’d like to remove the politics and just talk simply about whether people die, yes or no. I’m very binary about that. You give people adequate care and they tend not to die. Why is it that the death rate for Black women with breast cancer in Massachusetts, Connecticut, few other states is a third lower than the death rate in the United States for Black women? It’s because, it’s an amazing thing, you give people adequate care and they start not dying.
All I want to do is give people adequate care. All people. There’s a lot of people in poor Appalachian areas. There’s a lot of people in rural areas of Kansas, Missouri, Middle America who deserve adequate care. And when I say adequate care, I include prevention, risk reduction, appropriate screening, appropriate treatment.
One of the things you didn’t ask me about that I’m most concerned is cuts in Medicare and Medicaid.
You see, the largest group of people who partake in Medicaid in the United States, again are poor whites.
But again, I want to get rid of the race thing. I want to take care of all human beings who happen to be suffering or, actually, I even want to prevent people from suffering to begin with.
But if they are suffering from a disease, I want to take care of them irregardless of race.
Paul Goldberg: But it’s sort of nice to have the data right now to be able to make the argument we’re making.
Otis Brawley: It’s nice to have the data. It’s nice to have the cancer centers. Cancer centers are very important in defining what the problem are in a particular area. I like to talk about bespoke cancer control.
You go off and you have a tailor give you a bespoke suit.
I want to look at the population of Maryland, the distribution of the population in Maryland, which is my cancer center’s catchment area, and I want to do bespoke cancer control.
I have counties in Maryland where 20% of the teenagers are smoking, and I have counties in Maryland where 4% of the teenagers are smoking. I happen to think I need to do a lot more in the counties that have the 20% smoking, because I can predict we’re going to have a huge smoking-related cancer problem there 20, 30, 40 years from now.
Paul Goldberg: Imagine the Cancer Centers Program if NCI is weakened or brought down to its knees, which is a possibility at the moment.
Otis Brawley: Yes One of the things that the cancer centers have done very, very well is helped to disseminate high quality care throughout their catchment areas.
This is actually the reason why the cancer centers were in the NCI Revitalization Acts of 1971, Nixon’s war on cancer. It was to get technologies into the community and affect the treatment patterns of doctors who weren’t even associated with the cancer center.
It’s to define the real problems in the community because the problems for cancer control in Utah are different from the problems for cancer control in Kentucky.
This bespoke or tailored cancer control thing is what the cancer centers I think can do very well. Cancer centers bring a research element and help to keep us all honest. And they’ve done an amazing thing. By the way, when we talk about research, I like to think two-dimensionally. For me to think three-dimensionally is too complicated. Research is like a big circle, and as it grows, the periphery, which is our lack of knowledge, our understanding of our lack of knowledge…
By the way, that’s called ignorance. Ignorance is not knowing what you don’t know.
Okay, so when we start learning and the periphery gets bigger, our ignorance gets larger, but our appreciation of the fact that we are ignorant also gets better.
Paul Goldberg: Well, is there anything else I forgot to ask?
Otis Brawley: Oh, I just want to re-emphasize that I think our North Star needs to be keeping people healthy and when they get sick, making them healthy.
Our North Star needs to be preventing people from dying. I don’t hear that enough in our politics.
I heard it a lot, by the way, from the cancer center directors, these are guys and some gals who are on the front lines.
When I was at the NCI, and even today, we think of the cancer center directors as sort of the leaders in oncology in the United States. It’s sort of like in the Catholic Church, the cardinals are the princes of the Catholic Church.
Cancer center directors serve that function very much in oncology.
I look to the cancer center directors to educate people, be they congressmen or be they lay people in the community.
This is a COE thing again.
Educate them about science, the scientific method, educate them about the reason why we need to be scientific. Because when we have strayed away from science, we have killed people.
I hear straying away from science right now when I hear discussions about measles. I hear straying away from science when I see executive orders that quote papers that none of us have ever heard of and we can’t reproduce the data.
We need to be scientific, or else people are going to be hurt. I leave it to the cancer center directors of America to really teach people why we need to be scientific, why we need to be scientific and orthodox, why we need to apply that orthodoxy to all people or else we all are hurt.
Paul Goldberg: And that’s kind of the reason for The Directors, this podcast, because the roles of a cancer center’s director include the role of a public intellectual.
Otis Brawley: One thing I will also say is there’s a great deal of concern about waste.
I don’t see waste in our scientific infrastructure, but I do see waste in our practice medicine. And it’s interesting. It’s not an illegal kind of waste, it’s a failure to actually be scientific and practice the good science.
It’s a tendency to do things that feel good but have not been proven, and sometimes have even been proven to not work. And we have waste there.
We really should not tear everything down and try to rebuild. We should carefully sit down and carefully think about what we should be doing in terms of the practice of medicine and how medicine should be practiced.
That’s how we save money for Medicare and Medicaid, not by slashing and burning and hurting people.
Paul Goldberg: Well, thank you, Dr. Brawley. These are words of wisdom. And our thanks also go to our sponsor, The American Society of Clinical Oncology. Thank you.
Otis Brawley: Thank you.
