The National Cancer Registries Program, or NPCR, is a relatively small but highly impactful 33-year-old CDC program that gauges disparities in cancer and tracks progress against the disease. So, why was it left out of the Trump administration’s preliminary budget?
This episode is available on Spotify and Apple Podcasts.
In this episode of In the Headlines, Paul Goldberg, editor and publisher of The Cancer Letter, and Katie Goldberg, director of operations, talk about Paul’s recent story, “White House preliminary budget document provides no funds for highly impactful CDC cancer registries program.”
NPCR provides money to state registries, supports training of registrars, sets registry standards, and pays for development of registry software.
“I don’t know if anyone is going to call their congressman over cancer registries,” Paul said. “Can you imagine anything more yawn inducing than, you know, data collection?”
Boring though simple data collection may seem to some (not Katie), the program is vital in the effort to “identify and mitigate emerging challenges across the full American population,” Karen Knudsen, CEO of the Parker Institute for Cancer Immunotherapy and professor emerita at Sidney Kimmel Comprehensive Cancer Center, said to The Cancer Letter.
“Preserving and strengthening our cancer surveillance infrastructure is essential to ensuring that lifesaving progress reaches every community, and to continue success in decreasing cancer mortality rates. Because of programs like NPCR, we have achieved a striking 34% reduction in US cancer death rates since 1991,” Knudsen said.
Without the CDC cancer registries, the field will be left without standardized data.
“If nobody understands it, then you can say anything,” Paul said. “I’m making a simple observation, which is, if you don’t know what’s happening, you are free to make shit up.”
Other stories mentioned in this podcast include:
- HHS said it would terminate Women’s Health Initiative, then reconsidered
- DOJ letters to peer-reviewed journals allege partisan bias in medical literature
- Steven Libutti tells us about building a $900 million cancer hospital for Rutgers RWJBarnabas Health
- In her own words: Rathmell reflects on her priorities and values—and encourages everyone to do the same
- Makary vows to speed up drug approvals and end FDA’s “cozy” relationship with industry
- Guest editorial by Richard Goldberg: Regulation must keep up with scientific advances
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 (00:00): This week on The Cancer Letter Podcast…
Paul Goldberg (00:05): I don’t know if anyone is going to call their congressman over cancer registries. Can you imagine anything more yawn inducing than, you know, data collection?
Katie Goldberg (00:15): Not to me. <laugh>. I love data collection
Paul Goldberg (00:19): No, I’m talking about the populace—
Katie Goldberg (00:20): That’s my favorite thing!
Paul Goldberg (00:22): In the street, you know? No, I think it’s fascinating. I think it’s important, but, but we both know this stuff. We live and breathe it. But if you are measuring it, then or other, if you’re just out there looking at all of this and somebody says, oh, they’re killing the cancer registries. Okay.
Katie Goldberg (00:42): Does that have an impact on like how we know that there are certain hotspots for different cancers?
Paul Goldberg (00:48): Yeah. Yeah, yeah. Yeah.
Katie Goldberg (00:50): And then that would have an impact on environmental toxins as well. And so then who stands to benefit from it, if I’m just connecting dots here…
Paul Goldberg (00:58): But if nobody understands it, then you can say anything. So everybody benefits. Who wants to benefit? I’m making a simple observation, which is if you don’t know what’s happening, you are free to make shit up. It’s great. And nobody’s gonna say, boo.
You are 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 (01:38): 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 (01:48): So let’s get going.
Katie Goldberg (01:58): So, I am Katie Goldberg. I’m stepping in for Jacquelyn this week, and I am the director of operations for The Cancer Letter. I’m also the managing editor of the Cancer History Project, which is The Cancer Letter‘s historical Initiative. And Paul and Claire are joining us from, you know. some quiet corner of the AACR meeting in Chicago.
How’s that going?
Paul Goldberg (02:21): It’s pretty good. I love coming here. It’s, you know, you kind of wander through the halls and you see people and you realize how important this field is and how important it’s for all of us to be a part of it. And kind of like, why do we do what we do?
So it’s just really grounding, it’s grounding—that’s the word. And also some of it is groundbreaking. So yeah. And that’s me.
And we’re gonna, since we’ve got only one microphone and one computer between us, Claire is here and I’m gonna send over my…
Katie Goldberg (03:01): This is, this is really polished. I love it. Claire, how’s your first AACR meeting?
Claire Marie Porter (03:06): Oh, it’s been great. It’s been really sweet to put names to faces and faces to names, and I’ve been having a lot of fun.
Yeah, I went to a really interesting discussion yesterday that was Monica Bertagnolli and Kim Rathmell was there, and she gave The Cancer Letter a shout out actually, while she was on the panel, which was really sweet. And we went to the MSK reception last night which was really lovely. And the room was abuzz after their New York Times headline about the immunotherapy, the immunotherapy trial. Yeah. So, yeah, it’s been a good time.
I am actually gonna go upstairs to there’s an early onset colorectal cancer discussion happening, so I’m hoping to catch that, but…
Katie Goldberg (03:50): Yeah. Well, we won’t keep you I’ll, I’ll launch us into kinda a recap of this week’s issue, like Jacquelyn usually does. And hope you have a great time at the session.
Claire Marie Porter (04:00): Yeah. We miss you all. I’m gonna definitely shift back over to Paul…
Paul Goldberg (04:04): Shift over, look at this… This is just, this is like avant garde film, something like Fassbender, you know, something. And then, you know, the camera going….
Katie Goldberg (04:17): So in last week’s issue, Paul had a conversation with Steven Libutti, who’s director of Rutgers Cancer Institute, about the opening—
Paul Goldberg (04:25): Yeah. Watch Claire leave. She’s, this is, would you wave to the, to the folks?
Katie Goldberg (04:29): Bye, Claire <laugh>.
So Paul spoke with Steven Libutti, who is director of Rutgers Cancer Institute, about the opening of Rutgers new $900 million freestanding cancer hospital, which is scheduled to open May 13th.
We also had a column from Kimryn Rathmell about her new job as CEO of the Ohio State University Comprehensive Cancer Center.
And then we had a story from Claire about Marty Makary’s comments from his first sit down interview since beginning his role as FDA commissioner.
And our cancer policy section, which is a new weekly section in The Cancer Letter, was very long last week. And that’s really what we’re gonna be diving into today. So, Paul, do you wanna get us started? What, what’s kind of the big highlight from that section?
Paul Goldberg (05:13): Well, I’m still kinda shocked by it. the president’s budget proposal which by the way, it’s not really the, a document that is an intermediate document before the president’s budget proposal seems to cut funds for state cancer registries, which is about a 51 million item in CDC. now, the, the unfortunate and very puzzling and sad thing, if it’s really going to happen in the final version is this is a really hugely important part of what the cancer program I does. It just, it’s the entire intelligence apparatus. Are we succeeding? Are we failing? What’s winning we or cancer? And not having that. Now the epidemiology biostatistics world will be, will have, will have to do a lot more guessing. We look, this is, this is truly the US registries is the envy of the world, and it’s also not particularly expensive. I don’t know what it is that they’re turning out that that, that, that, that, that warrants destruction.
Katie Goldberg (06:40): So this is measuring cancer incidence rates
Paul Goldberg (06:43): In states, and it’ll allow
Katie Goldberg (06:45): What happens if we stop measuring what happens? We won’t know, basically. Exactly. <laugh>,
(06:52): Thank you. Thank you for that. Yeah, I mean, we had a whole episode on that a few weeks ago about, you know, the, the incidence rates and the Trump administration putting out numbers that aren’t really related to anything that the US is putting out.
Paul Goldberg (07:08): Well, that, that was data from two researchers, three researchers in Wuhan who came up with conclusions and data that nobody’s ever seen before, because they basically they basically cooked it wrong. So and having, having all of this, may I, I don’t understand why this happened. Maybe it won’t happen because, you know, Kennedy himself has said that we’re making mistakes in 20% of the cases. So it’s you know, it’s too early to panic, but but if that really goes down, then well, the entire field of of health services research is going to become much poorer. It’s not, it’s it’s not going to be good for SEER either. But SEER also took a cut last year from the Biden administration. I, I don’t understand why this is happening.
Katie Goldberg (08:20): Yeah. Well then there’s the Women’s Health Initiative.
Paul Goldberg (08:23): Well, that seems like it might be. Okay,
Katie Goldberg (08:27): So what, what exactly happened there? It says, so it was, it was going to get cut, and then it, it didn’t go <laugh> it
Paul Goldberg (08:33): Get cut, and then Kennedy said, no, it won’t get cut. I think it’s, it’s maybe they were doing that analysis by looking for words like women or women’s health. And, and here is, here is a clinical trials organization that has essentially changed standard of care and saved many, many, many, many, many lives and, and changed you know, the way hormone replacement therapy is used. So, so it also saves billions and billions and billions of dollars. I’ve, we’ve it’s in the story. I just don’t remember numbers.
Katie Goldberg (09:16): No, I have it right here.
Paul Goldberg (09:17): Oh, please.
Katie Goldberg (09:18): Yeah. I mean, it’s there have been 126,000 fewer breast cancer cases as a result of their findings, 76,000 fewer cardiovascular events…
Paul Goldberg (09:30): Let’s just let, I, I think people should just look at that themselves. It’s in the story. What about the number, the dollar number, the dollar amount? It’s like $26 billion in unnecessary medical services saved.
Katie Goldberg (09:44): there’s been a net economic return of 37.1 billion over 10 years.
Paul Goldberg (09:51): So there you go. I mean of course you have to cut that.
Katie Goldberg (09:55): Of course. Yeah. Well, and then 126,000 fewer breast cancer cases and 76,000 fewer cardiovascular events. I mean, these are, these are not numbers to sniff at by any means.
Paul Goldberg (10:09): That too.
Katie Goldberg (10:10): Just, you know, and if it is just because women is in the title, that’s…
Paul Goldberg (10:14): That’s the reason. I guess I have no idea. I don’t really work for DOGE <laugh> rumors…
Katie Goldberg (10:21): I mean, it would be a surprise to me if you did <laugh>,
Paul Goldberg (10:23): It would be a surprise to me if I did as well. So who knows? It’s just, I, I don’t get it. But, but then, but there’s, the good part of it is that it’s not going to happen, apparently. So it, women’s Health initials in initiative is going to continue now, when it started, that was when they one full-time at the cancer letters. So it’s really kind of measures my, my career in some ways, too. So it’s a landmark for me. <laugh>.
Katie Goldberg (10:55): Yeah. Well, and then there’s the DOJ letters to peer reviewed journals. Do you wanna talk about that?
Paul Goldberg (11:03): Yeah, I mean, that basically is a letter that went to a bunch of peer reviewed journals chest and New England Journal among them that asked the journals how they select and how do they go about their business of, of running peer reviewed papers. And is it is it some kind of, is there some ideological agenda behind it? So I dunno, there is a, there is a belief out there that there are certain orthodoxies that run journals and, and that certain kinds of hypotheses do not get published. do not see the light of day, may, maybe some of it is true because I have seen orthodoxies form too over many years. But I’m not sure that a letter from DOJ is going to solve that. I think, I think there could be some softer levels of persuasion that could occur, occur to show that there, there are alternative thoughts or there are no alternative facts, and journal should really focus on facts. So, but, but, but I guess some of the folks who felt like, like they were ostracized by the establishment. Yeah, I, I mean it, these consensuses and, and orthodoxies do form That is true.
Katie Goldberg (12:43): Yeah. I mean, there’ve been some major discoveries from people who were really ostracized by the establishment. Right? You look at Bernie Fisher—
Paul Goldberg (12:53): But, but on the other hand, if you are ostracized by the establishment, it doesn’t mean that you have a major discovery in you,
Katie Goldberg (13:00): Right. <laugh>.
Paul Goldberg (13:00): So you could be Bernie Fisher, or you could be completely wrong. <laugh>
Katie Goldberg (13:06): Yeah.
Paul Goldberg (13:06): But that is also a possibility. And the quacks do feel ostracized as, as did Bernie. Mm-hmm <affirmative>. But Bernie went through the establishment that he was able to get into the, and get his data published. So it’s a very interesting set of questions. And I’ve seen NEJM, for example, come up with some really crazy papers. but then again, you know the, the, the it science can self-correct. I hope. Peer reviewed is, may not be a good system, but it’s the best one we have. That’s what I believe, but who cares what I believe.
Katie Goldberg (13:54): Right.
I mean, does it, what kind of impact does it have on science for Kennedy to, to say he wants to prosecute medical journals?
Paul Goldberg (14:03): I’m not sure it’s Kennedy. It’s DOJ, right? I don’t know. I, I really don’t know where it’s going, if anywhere.
Katie Goldberg (14:11): My understanding is that Kennedy has said that he wants to prosecute medical journals. I don’t know. He’s not the one doing the prosecuting.
Paul Goldberg (14:18): He, he says many things mm-hmm <affirmative>.
(14:22): so some of those things make sense and some, I, I’d like to wait and see <laugh>, so God knows what’s happening with all of this. but yeah, I, I’m, this is, these are folks who believe that natural immunity should have been reached in in, in Covid instead of s ostracized. And, and maybe, maybe they should have been, maybe they shouldn’t have been, but I’m not sure DOJ is necessarily the forum to or necessarily the tool to to, to resolve scientific disputes. It’s been done that kind of approach. I’ve seen it done, but not in the United States.
Katie Goldberg (15:18): Do you wanna talk about any other, any other highlights from the past week?
Paul Goldberg (15:23): <laugh>? Those were the big ones. Mm-hmm. I, I, I really think the scariest one is, is what’s happening with CDC, and you really had to look for it. Like, I couldn’t really find it initially when I got that 64 page document from OMB, I could not figure out, I couldn’t make heads of tails of this. And it really took us a week to get through it, to really understand it and really confirm that this is, what it really says is, is that they’re killing this ridiculously killing this $51 million program. And, and by the way, I don’t know if anybody is a constituent to this, you know i, I, I don’t know if anyone is gonna to call their congressman over cancer registries.
Can you imagine anything more yawn inducing than, you know, data collection?
Katie Goldberg (16:17): Not to me. <laugh>. I love data collection. That’s my favorite thing
Paul Goldberg (16:24): No, I’m talking about the populace… in the street, you know? No, I, I think it’s fascinating. I think it’s important, but, but we both know this stuff. We live and breathe it. But if you are measuring it, then or other, if you’re just out there looking at all of this and somebody says, oh, they’re killing the cancer registries. Okay,
Katie Goldberg (16:44): Does that have an impact on like how we know that there are certain hotspots for different cancers?
Paul Goldberg (16:50): Yeah. Yeah. Yeah. Yeah.
Katie Goldberg (16:51): And then that would have an impact on environmental toxins as well. And so then who stands to benefit from it? If I’m just connecting dots here…
Paul Goldberg (16:59): But if nobody understands it, then you can say anything. So everybody benefits who wants to benefit. Yeah. If you don’t have the data, you can just BS your way through a policy. It’s great. I don’t know if that’s, I, again, this, I don’t wanna say that this is, I I’m not a conspiracy theorist.
Katie Goldberg (17:20): You’re a journalist, you’re not a conspiracy theorist.
Paul Goldberg (17:21): Journalist. Yeah. Yeah. You have to ask questions. I’m making a simple observation, which is if you don’t know what’s happening, you are free to make shit up. It’s great. And nobody’s gonna say boo.
Katie Goldberg (17:35): Yeah. I mean, and everyone kind of loses in this context,
Paul Goldberg (17:39): But they dunno it, people who lose don’t know they lost.
Katie Goldberg (17:43): That’s true.
Paul Goldberg (17:45): That’s therefore nobody needs, but they dunno, they gained. It’s just, it is just kind of turn the lights out. Yeah.
And it’s the data that cancer centers use to find out what’s happening out there you know, in their, in their catchment areas. So if you learn that, you know, a certain kind of area, and see the reason this was even necessary is that the United States population and regions are so heterogeneous and you don’t really you have to look at what is actually happening in there. So it doesn’t go from state to state in the same way.
So if you learn that a certain, you know, cluster of of people in say I don’t know, in Appalachia has a certain cancer. So you, you, you, you find them and you detect the data and you act on it if it’s in your catchment area. And, and, and that also drives your basic science and it drives the interventions, it drives the cancer centers.
Katie Goldberg (19:07): Right. So, I mean, lung cancer is—I think Appalachia has some of the highest incidence rate of lung cancer. And, you know, tobacco cessation programs can be targeted towards that. That data leads to saving lives and it leads to catching things earlier and it leads to preventing disease in the first place.
Paul Goldberg (19:27): Mm-hmm <affirmative>. Mm-hmm <affirmative>. And, and also don’t have that. No. If you lose that, you’ve lost a lot throughout the United States. and then who is there in Congress to say this won’t do mm-hmm <affirmative>. but then again, you know the president’s budget proposal is just the, just a proposal. Congress legislates. So, yeah.
Katie Goldberg (20:01): I mean, in the first Trump term, he had these, you know, 20 to 40% cuts that he kept pushing and Congress pushed back and, you know, the, the funding was actually higher than it was…
Paul Goldberg (20:17): Pretty, yeah, yeah. Yeah. He wanted like a 20% cut and ended up with a 3% increase. Yeah. So, but now he’s, and, and there was also a 10% on indirect costs.
Katie Goldberg (20:30): It’s just a different Congress as well. So.
Paul Goldberg (20:33): It’s a different Congress. It doesn’t take a whole lot of people to just say, Hey, this won’t do. But you have to make sure that those people understand that this is really a catastrophic thing. And I’m also not really convinced that this is not, again, not being a conspiracy theorist <laugh>, I’m not convinced that this is deliberate. I think somebody may have just screwed that up. and, and, and the results are just becoming clear to them right now. And that could very well be somebody at the OMB saying, oh shit.
Katie Goldberg (21:08): Well, The Cancer Letter is on the story. So.
Paul Goldberg (21:10): <laugh> We’re on the story, we’ll be on the story. And, you know, some, everybody should be on that one. It’s too big. It’s too important. And it’s so easy to overlook, which I’d like charitably to think is what happened here is somebody just screwed up.
Katie Goldberg (21:28): Yeah. Well, I’m, I’m glad we’re still covering it. I hope you enjoy the rest of your time at AACR.
Paul Goldberg (21:36): Well, thank you. And this is a great time to be a journalist, <laugh>.
Katie Goldberg (21:41): It certainly is.
Paul Goldberg (21:42): Thank you.
Jacquelyn Cobb (21:45): 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 (22:05): Until next time, stay informed, stay engaged, and thank you for listening.
