In last week’s issue of The Cancer Letter, the cover story featured Col. Susan Fondy, an Army veteran and stage 3 breast cancer survivor, who is now living with lymphedema. Fondy is now a lymphedema advocate, working to prevent further cuts to the already-sparse funding for the disease.
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Fondy’s story is the first of many The Cancer Letter plans to publish in order to highlight the human impact of the current administration’s sweeping cuts to the Department of Health and Human Services.
In this episode of In the Headlines, Paul Goldberg, editor and publisher of The Cancer Letter, and Jacquelyn Cobb, associate editor, welcome a special guest, George J. Weiner, to talk about the importance of telling stories when trying to communicate the importance of cancer research funding to the public.
“We have to be better storytellers,” Weiner said. “Again, we tend to want to just present the facts, and let the listener put the facts together into the story. We need to be telling that story from beginning to end more clearly.”
Weiner is the CE Block Chair of Cancer Research and director emeritus of the University of Iowa Holden Comprehensive Cancer Center, as well as a professor of internal medicine-hematology, oncology, and blood & marrow transplantation and professor of pharmaceutical sciences and experimental therapeutics.
“We really need to partner with our patients and the public on this,” Weiner said. “The public doesn’t care about indirect costs. They don’t care about pay lines. They don’t care about whether someone gets a promotion or not. What they care about is whether the research we’re doing is going to help their lives, and help the lives of their children and their grandchildren. And that’s what we need to focus on when we’re communicating with the public.”
Stories mentioned in this podcast include:
- She flew Black Hawks and battled cancer—now Col. Susan Fondy grapples with cuts to lymphedema research
- As cancer scientists, we must change how we engage with the public on the impact of NIH cuts What the scientific method obscures
- In weekly vigils, current and former NIH staff grieve the impact of Trump cuts The Saturday gatherings at NIH’s Metro station are part graveside service, part street theater
- Congress passes Trump’s megabill featuring historically steep Medicaid cuts
This episode was transcribed using AI transcription services. It has been reviewed by our editorial staff, but the transcript may be imperfect.
The following is a transcript of this week’s In the Headlines, a weekly series on The Cancer Letter podcast:
Jacquelyn Cobb:
This week on The Cancer Letter Podcast…
You say, even a brief disruption will slow progress, and I think that that is something I’d love to hear you talk about a little bit more, considering what’s happening right now.
George Weiner:
Research is a team effort. I’m not going to say a team sport, because it’s not a sport, but it’s a team effort. And we require expertise from people with very varied backgrounds to make that progress. It is always challenging to keep these teams together and humming the way they should be, and if there is a brief interruption in funding, key players in the team will go elsewhere. And sometimes it can take months or years to rebuild those teams.
So, the lack of certainty, the sense of chaos and confusion, is making it hard to keep those teams together. Or, in those new and very exciting areas of research, to build new teams where we’re bringing people with new expertise on board. And so that’s why I say even a brief interruption is going to slow things down considerably.
Paul Goldberg:
You’re listening to The Cancer Letter Podcast. The Cancer Letter is a weekly independent magazine covering oncology since 1973. I’m your host, Paul Goldberg, editor and publisher of The Cancer Letter.
Jacquelyn Cobb:
And I’m your host, Jacquelyn Cobb, associate editor of The Cancer Letter. We’ll be bringing you the latest stories, groundbreaking research, and critical conversations shaping oncology.
Paul Goldberg:
So, let’s get going.
Jacquelyn Cobb:
Hello, Paul. How’s it going?
Paul Goldberg:
How are you, Jacquelyn? How was your July 4th?
Jacquelyn Cobb:
It was good. We made the joke at our Thursday editorial meeting when we were laying out the issue, that for July 4th, I will be leaving the country. So, I was very patriotic spirited last week, but we spent all weekend basically traveling to Peru, so right now I am in Cusco. I have a crazy view from my little makeshift desk here, I don’t know if you can see it. It’s not the best, not the most polished view of spinning my laptop around, but it’s stunning. I feel so lucky to be able to work from here.
Paul Goldberg:
Yeah, well that’s the glamorous life of a Cancer Letter editor.
Jacquelyn Cobb:
Yeah, yeah. And you are in Vermont—
Paul Goldberg:
Yes.
Jacquelyn Cobb:
… So we’re both kind of phoning it in.
Paul Goldberg:
Yes. Actually during our morning meeting, the staff meeting, a bear came by and was nose to nose with my Aussie.
Jacquelyn Cobb:
Oh my goodness.
Paul Goldberg:
So there was a lot of barking, and the bear ran away, and it was really quite exciting.
Jacquelyn Cobb:
Yeah, it was a bear cub; right?
Paul Goldberg:
It was a bear cub, yeah.
Jacquelyn Cobb:
Yeah, that’s so awesome.
Paul Goldberg:
Yeah, yeah.
Jacquelyn Cobb:
But there was a screen between them, right? They weren’t like—
Paul Goldberg:
Right. They weren’t truly nose to nose, there was a screen, absolutely. But screens, you know, for a bear. Or even a cub—
Jacquelyn Cobb:
True, true.
Paul Goldberg:
… or an Aussie, for that matter—
Jacquelyn Cobb:
Yeah, of course.
Paul Goldberg:
… it can be unpleasant. Plus, of course, a bear cub is going to be, there would be a mother bear somewhere nearby. And that becomes a little bit more problematic, if you happen to be an Aussie.
Jacquelyn Cobb:
Yes. Yes, yes.
Paul Goldberg:
Yes. So, that was a lot of fun. And July 4th was a blast.
Jacquelyn Cobb:
Yeah. You went to a parade, right?
Paul Goldberg:
Yes, yes, yes. Our group was led by a crazy seven-year-old, who decided to go to the top of Mount Mansfield, and then at the top of Mount Mansfield, had an epiphany that he wanted to go to a parade, so we went to a parade, and we watched fire trucks. And he picked up candy as… Well, I did, too.
Jacquelyn Cobb:
Yeah. I was going to say, “As nine-year-olds do,” but obviously it’s not age specific. I would be picking up candy as well, for sure.
Paul Goldberg:
Yeah. Plus, I was corrupting his mind by teaching him Yiddish, so.
Jacquelyn Cobb:
Corrupting his mind? I don’t think so.
Paul Goldberg:
Well, he now knows a bunch of words that I knew when I was his age.
Jacquelyn Cobb:
Oh my gosh.
Paul Goldberg:
This poor guy.
Jacquelyn Cobb:
Any bad words in Yiddish, or just normal?
Paul Goldberg:
Well, yeah.
Jacquelyn Cobb:
Lucky seven-year-old. Lucky seven-year-old. Love it.
Paul Goldberg:
Well, so, exciting-
Jacquelyn Cobb:
Yeah. I can-
Paul Goldberg:
… it’s a great time to be a journalist.
Jacquelyn Cobb:
As always, as always.
I can take us through last week’s issue. I’m really excited to talk about it, because we were finally able to, last week, publish what we’ve been meaning to publish, and we’ve talked about this on the podcast almost every week. What we’ve been meaning to for months, which is a perspective directly from the patient.
So, we spoke with Colonel Susan Fondy, who is an army veteran, two-decade long career, and a breast cancer survivor. And she is now struggling with lymphedema, which is a condition that is historically underfunded. And basically, the story is kind of about how lobbying efforts from advocates over the last couple of decades, that have given lymphedema the little funding that they have seen, is now being completely undercut.
And all of the lymphedema funding, not all of it, to be fair, there still is ARPA-H funding for lymphedema, and some grants still exist for lymphedema. But a lot of the funding has been slashed, not that it’s been specifically targeted, but as just part of the sweeping cuts to research at HHS.
So, it was really lovely to speak with Colonel Fondy. She is a superstar, she was such a joy to speak to, and she was able to talk to us about how lymphedema is affecting her quality of life in her retirement.
So, really awesome story, definitely check it out. She is, like I said, I have a little bit of stars in my eyes with her, because she was a pediatrician, then when 9/11 happened, she felt called to serve. She spent two decades in the military as a aerospace medicine doctor. She became the chief surgeon of the National Guard. She had this crazy, awesome career in the military, and she retired and now she’s getting her doctorate in strategy and defense, I believe. I might be getting that a little bit wrong, but something along those lines. So she’s just a superstar. I’m mildly obsessed with her.
So other than that, once I get off my little, not soapbox, but my little nerding out on Colonel Fondy, we had a story about how current and former NIH staff are holding weekly vigils to grieve the impact of Trump’s cuts. There are really cool photos in that story showing posters decorated as headstones adorned with phrases like, “In loving memory of vaccines,” and “RIP 256% return on investment, RIP gender-affirming care,” things like that. So, really cool story, and like I said, really, really cool photos.
In the Cancer Policy section last week Claire, and I think Paul as well (I was taking a nap at this point because the Colonel Fondy story took a lot of time in sort of a shortened week) but Paul and Claire took on the last minute-writing up of the passage of President Trump’s big, beautiful bill by the U.S. House of Representatives. The big beautiful bill is a sweeping legislation that makes the biggest cuts to Medicaid since the program began in the 1960s. So we’ll definitely be covering more on that as the impacts of it unfold.
And finally, we had a guest editorial by George J. Wiener and Elizabeth M. Jaffee, which discussed how scientists trained in the scientific method must adjust their approach to communicating with the public by acknowledging that focusing on the facts is, quote, “inadequate when trying to influence public perception.”
That’s the story we’re going to be focusing on this week.
Paul Goldberg:
Jacquelyn, could we go back a little bit to the Colonel Fondy story, which was our lead story? Lymphedema is a disease that one can’t make any money in, which is why there is not that much interest, or really opportunity for pharma for the industry. Which means that the government should be funding this, because it’s not a little problem, it’s a very big problem. Can we talk about that a little bit?
Jacquelyn Cobb:
Yeah, yeah, totally. And I think that’s sort of been the misconception. I spoke with some advocates as part of the story, and that seems to be, at least what he said, is a huge part of the problem—is that you go through cancer treatment, you go through surgery, radiation, both of which can lead to lymphedema. And there’s kind of this attitude that, “You survived cancer, if you get lymphedema, you get lymphedema.” And there’s not this awareness of how severely it can affect quality of life.
And again, it can lead to death. It’s not as, maybe, direct as a cancer death necessarily, but lymphedema can lead to obesity, which obviously can lead to higher rates of death. It can lead to heart disease. I’m not a lymphedema expert by any means, of course, but my understanding is that heart disease sometimes is actually lymphedema of the heart, and so that’s obviously a very negative manifestation of this disease.
And just in terms of quality of life, there were really horrible, horrible stories that I heard as part of writing the story about people going out in the world with lymphedema, which I guess we haven’t said it, it’s characterized by swelling of limbs. And it can get pretty severe, and people are treated very cruelly out in the world. The story that I was sort of referencing earlier was one of the members of the Lymphedema Education and Research Network said that their spouse was tapped on the shoulder, and told that they were disgusting, and need to lose weight. And it was lymphedema. It wasn’t like… I mean, regardless, that’s not something that should happen. But this disease really does have a negative impact on people’s lives, and that person never left the house again. It’s very severe.
And Colonel Fondy, her case is I’d say a little less severe than that, at least from what I understand. But there are things that really impact her quality of life. She has to constantly wear the lymphedema garment. And we talked about this in our interview, but this is sort of a separate conversation, I’d say a separate story that I didn’t get into too much in the story from last week. But she’s been having a hard time getting enough lymphedema garments through the VA, just a bureaucratic nightmare. And so she only has two, I think right now, and she needs three. Or maybe it’s three, and she needs four, something like that. But she has limited garments, so she has to be very careful about when she exercises, when she sweats. She has to sleep with it and have it during the day, so she wants to trade it out every day.
There’s all of these things that she has to be aware of. She has to avoid getting it wet, so even things like drinking a soda that has condensation on the outside. She has to be really careful about washing dishes, things like that that most people just take for granted, she has to be really conscious of. And I mean, that’s to say nothing of the pain. If she doesn’t have her lymphedema garment on, if she goes 30 to 45 minutes without it on, it starts to ache and throb. And for that to be sort of a, “Oh, that’s not that big of a deal.” It’s like, that is a big deal, thankfully there are things she can do to prevent that. But this is a lifelong, chronic, progressive disease that doesn’t have much research funding to begin with, because of like what you said, Paul. There’s not a lot of money in it, and because people kind of write it off as like, “Oh, it’s just a little bit of swelling,” when it is a lot more than that.
Paul Goldberg:
Well, in the era when lesser surgeons did lesser mastectomies, and even beyond, surgeons were cavalier about taking out a lot of lymph nodes. And a lot has been learned since then.
Jacquelyn Cobb:
Definitely.
Paul Goldberg:
Through government-funded research, by the way.
Jacquelyn Cobb:
Yeah, 100%. Before, what you were saying, Paul, before we sort of learned that you don’t need to be as cavalier, taking out lymph nodes. That was the axillary node dissection. Now, the standard of care ideally is to do a sentinel node biopsy, which really just takes out fewer, take out what you need type thing. And that’s ideal. But in the case of Colonel Fondy, she had to have an axillary node dissection, because of the extent to which her cancer had gone to her lymph nodes. So for her cancer treatment, she had to get this more aggressive treatment, more aggressive surgery. And that’s part of it too, is a lot of the funding that’s been cut is in lymphedema education, lymphedema awareness. And Colonel Fondy, being a physician, was more equipped than most, I’d say, to advocate for herself and be aware of potential complications.
And she brought up her concern about lymphedema to her surgical oncologist, and he basically said, “You’re not going to get it, because you’re not obese.” He was like, “You’re small, you’re not going to get it. You don’t need to worry about it.” And then after the fact when she did develop it, she did more research into it, and she found out that she had almost all of the risk factors. I think one of the main ones being that she had this axillary node dissection, but she didn’t have that sort of one that is in the consciousness of a lot of surgical oncologists that are, “You need to look out for obesity when thinking about lymphedema,” when that’s clearly not the full case of it.
And yeah, the lymphedema Education and Research Network is really interesting, because they have these things. And this is another thing I wasn’t able to get into the story, unfortunately, but they have centers of excellence for lymphedema. And there’s a lot of things that surgical oncologists can do, if they are aware of it and they’re prepared to do it, and they have, again, are willing to go through with it. But you can measure lymph output before and after surgery, before clinical symptoms start to show. So before swelling actually starts to show, so that you can catch it early and not let it progress as far or as severely.
And there’s also surgical interventions. You can take lymph nodes from other parts of the body and put them in the areas where the lymph nodes are taken out. Or you can, and this is getting a little complicated, but you can actually take the lymph vessels that are connected to the lymph nodes that you have taken out for cancer treatment, you can put them and connect them right to the blood vessels and have them circulate in the body that way and dump back into the heart, which is where they’re going anyway. And that’s a big help as well, to prevent lymphedema. So there are ways to prevent it, there are ways to deal with it, if this awareness and public consciousness comes about. And that’s what LERN is really trying to do. But yeah, LERN is one of the organizations that lost its funding with the federal budget cuts. So yeah, it’s really just a very unfortunate situation, because these people don’t necessarily need to be suffering like this.
Paul Goldberg:
Yeah. The other bit is, which is why we put the story, by the way, on page one. The other bit is that we are just starting to hear from patients, and here is a patient we’ve just heard from. And that’s why she’s on page one, that’s why we need to be hearing more of that. There is an editorial decision made here, which was a collective decision. But what’s your sense about how quickly we’re going to be starting to hear from patients?
Jacquelyn Cobb:
Yeah, yeah, absolutely. I mean, I think it really depends. Claire has been working on a pediatric oncology story for a while, and I think there are some things that are very much still up in the air. There’s a lot of uncertainty, especially with grants being terminated, then reinstated, but they’re still frozen, so they’re functionally terminated because the universities can’t pick up the bill in the meantime, anymore. It’s getting to the point where, I’ve spoken to a couple of people, including for the lymphedema story, that their grants are only paused, they’re only frozen. But their labs and their research is going have to be shut down at this point, because it’s been months and months of, like I said, the university picking up the bill in the meantime, and they can’t continue doing that.
So, yeah, I mean, I think that things are very much up in the air right now, and with the big beautiful bill passing, as well, I know Paul, you have something that you want?
Paul Goldberg:
Mm-hmm.
Jacquelyn Cobb:
So yeah, I think it’s going to be coming in more and more, and faster and faster, I think. But yeah, still a lot of uncertainty right now.
Paul Goldberg:
If we were to move on to the guest editorial by Dr. Weiner and Dr. Jaffee, there’s a really interesting point in there, which is, it’s an epistemological point. How scientists communicate with the public, in a way that’s actually, really doesn’t work. People don’t truly understand them, because scientists assume that other people they’re talking to, other scientists, accept the scientific method. Whereas, the public doesn’t necessarily even know what scientific method is, and a lot of the public servants don’t know it either. Could we talk about that a little bit?
Jacquelyn Cobb:
It’s wonderful that you asked that, Paul, because we happen to have George Wiener with us today. So, he can answer that question himself!
George Weiner:
Well, glad to be here, happy to join you and to talk about this extremely important topic, Paul. As you said, as scientists, we tend to speak to each other in a certain way based on the scientific method. There are certain givens that we just take that everybody agrees and understands. And then we focus on the facts, what the facts tell us, we interpret them as objectively as possible, and then we talk about alternative explanations for what we have in front of us.
And we’re used to conversing this way in our grants, in our publications, when we meet face-to-face. That’s how we’ve approached public policy as well. And when it comes to public policy, that approach doesn’t work as well. We may consider ourselves doctors, but others look at this information from a spin doctor point of view, and they look at the part of the argument that helps them make their case. And very often, when that happens, the story gets turned upside down and it’s not the points that we were trying to make.
Paul Goldberg:
So, what do we do about it?
George Weiner:
Well, I think first of all, we have to take a step back and think about the very foundation of what we’re talking about. The foundation that we don’t talk to each other about, because we take it as a given, as I said. The fact is, we all know that cancer is incredibly complex, and it’s not something where we’re going to find a cure in a matter of weeks, based on one spectacular discovery. We all understand that it takes sustained investment, and that that investment has to go on for years and decades, for us to make the kind of real but incremental progress that we’re making now. So those are some of the givens we have to start with, when talking to the public, and we have to make those points very, very clear.
We also have to understand what the public understands, and what they don’t. One of the key issues that I think we’ve all heard over and over again, is that if the government doesn’t support cancer research, the private sector will. And we know that there is a role for the private sector, they play a critical role, but there’s also aspects of cancer research that the private sector is just not going to cover. That includes basic research, that includes prevention research, that includes research into rare cancers, childhood cancers. All those areas where there is not a real profit margin.
And so, we want to work closely with our industry colleagues, but there is an absolute vital role for governmentally supported research that’s really the foundation of what the private sector is able to do.
Paul Goldberg:
Well, there was an interesting piece that we ran this week, which Jacquelyn wrote, about lymphedema. There’s an example of a disease you can’t make any money in.
George Weiner:
No, that’s absolutely correct. If we look at our goal, which is to reduce the pain and suffering from cancer, some of those things can result in private sector investment because of the potential return on that investment. But there’s other incredibly important areas of research where that profit margin isn’t there, and that’s where both philanthropy and the government steps in, and both of them are absolutely vital.
Paul Goldberg:
How soon do you think we’ll start hearing from patients in a systematic way? Because to them, this is not an academic discussion, this is not something that’s ivory tower. It’s life and death.
George Weiner:
It is life and death, and it’s also dependent on the speed of progress. One of the things that I frequently say is that progress will be proportional to investment. We’ll continue to make progress, whether or not the government investment increases or drops dramatically, but the speed of that progress is going to depend on the research funding we have. Which means 10 years from now, there will be either more or fewer patients we can help, based on the research we’re doing today. I’m hopeful that we will start hearing more and more from patients, because they’re the reason we do the research. It’s not to get a grant, it’s not to be on a podcast, it’s not to advance ourselves. It’s to get those discoveries to where they can help patients as quickly as possible, and that’s dependent on funding. And it’s dependent on our ability to communicate the message more effectively.
Jacquelyn Cobb:
There was just one line in your story that I thought was really interesting, where you say, “Even a brief disruption will slow progress.” And I think that that is something I’d love to hear you talk about a little bit more, considering what’s happening right now.
George Weiner:
Research is a team effort. I’m not going to say a team sport, because it’s not a sport, but it’s a team effort, and we require expertise from people with very varied backgrounds to make that progress. It is always challenging to keep these teams together and humming the way they should be, and if there is a brief interruption in funding, key players in the team will go elsewhere. And sometimes it can take months or years to rebuild those teams. So the lack of certainty, the sense of chaos and confusion, is making it hard to keep those teams together. Or in those new and very exciting areas of research, to build new teams, where we’re bringing people with new expertise on board. So that’s why I say even a brief interruption is going to slow things down considerably.
Paul Goldberg:
Getting back to the epistemology of this, how should scientists communicate with the public? How do you do it differently, is there a way to summarize it? You and Dr. Jaffee go through this in considerable detail, and I hope everybody reads the piece, but what would be your in-a-nutshell summary?
George Weiner:
Well, I think in a nutshell, I think we have to be less of the scientific nerd, and more of a Ken Burns and tell the story. And we need to do that with patients. The CBS Sunday Morning piece with Ted Koppel, they did a beautiful job weaving together really remarkable patient stories, from some very brave patients going through very difficult times. So, we have to be better storytellers. Again, we tend to want to just present the facts, and let the listener put the facts together into the story. We need to be telling that story from beginning to end more clearly.
Paul Goldberg:
Well, thank you. Is there anything we forgot to address?
George Weiner:
I would like to emphasize that we really need to partner with our patients and the public on this. Again, the public doesn’t care about indirect costs. They don’t care about pay lines. They don’t care about whether someone gets a promotion or not. What they care about is whether the research we’re doing is going to help their lives, and help the lives of their children and their grandchildren. And that’s what we need to focus on when we’re communicating with the public.
Paul Goldberg:
Well, let’s work on this together. Thank you so much.
George Weiner:
Well, thanks for allowing me to join you today.
Paul Goldberg:
Thank you.
Jacquelyn Cobb:
Thank you, Dr. Weiner.
Thank you for joining us on The Cancer Letter Podcast, where we explore the stories shaping the future of oncology. For more in-depth reporting and analysis, visit us at cancerletter.com. With over 200 site license subscriptions, you may already have access through your workplace. If you found this episode valuable, don’t forget to subscribe, rate and share. Together, we’ll keep the conversation going.
Paul Goldberg:
Until next time, stay informed, stay engaged, and thank you for listening.
