In this episode of The Cancer Letter Podcast, Jacquelyn and Paul talk about the first meeting of the National Cancer Advisory Board, the uncertainty of cancer registries, and about choosing what to cover as the Trump administration “floods the zone.”
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At the time of recording, the recording of the two June 10 NCAB meetings had been taken off the videocast website, raising concerns about the availability of public record.
“We do watch these things and we do care about these things, and I think the world needs to have these things,” Paul said “Having an entire two meetings missing, I sure as heck hope they find them. But, again, this is something that’s of great importance to us and probably not many others.”
As of June 18, both NCAB meetings are now available on the NIH website.
“A few years ago, really a few months ago, we would’ve made a big deal out of this because, this is public record. That’s what we do,” Paul said.
As a near-endless stream of crucial information trickles out of Washington and out of cancer centers across the country, Jacquelyn talks about how important it is to keep up.
“It’s the first time in my journalistic career—very short journalistic career—that it feels like we really have to be writing this stuff down,” Jacquelyn said. “We have to be recording it. People’s lives are at stake, you know?”
Other stories mentioned this week include:
- The Directors: Candace Johnson and Jonathan Friedberg on living through uncertainty at NCI, payment woes
- Senators slam Bhattacharya for deflecting responsibility for NIH cuts, upheaval—Susan Collins: Trump’s 40% cut is “so disturbing”
- In first NCAB meeting since Trump’s inauguration, Lowy reflects on funding choices in lean times
- CRC patients with cannabis use disorder may have higher odds of death within five years of diagnosis
- The Cancer Letter receives nine journalism, design awards
- In “Bethesda Declaration,” NIH employees, Nobel laureates say Bhattacharya is favoring politics over U.S. science, health
This episode was transcribed using 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 (00:03):
You actually ended up pulling an all-nighter I think I suspect on Thursday to Friday.
Jacquelyn Cobb (00:11):
Not quite an all-nighter, but, but close. Yeah, I’ve been doing that pretty regularly at this point, but we have to write it. It’s the first time in my journalistic career—very short journalistic career—that it feels like we really have to be writing this stuff down,” Jacquelyn said. “We have to be recording it. People’s lives are at stake, you know? It’s definitely a motivating factor. It keeps me up to write, which I’m happy for.
Paul Goldberg (00:46):
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 (01:01):
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 (01:11):
So let’s get going.
Jacquelyn Cobb:
Hello, Paul. How’s it going?
Paul Goldberg:
Hi, Jacquelyn. How are you? Good, good.
Jacquelyn Cobb (01:26):
What’s your background?
Paul Goldberg (01:28):
My background? I, well, I was born in the Soviet Union. Is that what you meant?
Jacquelyn Cobb (01:35):
What’s behind you, physically?
Paul Goldberg (01:37):
Ah, ah, well, let’s see. I don’t know if you can see the whole thing. See is it up, is it backwards
Jacquelyn Cobb (01:49):
The way? No, you’re good.
Paul Goldberg (01:50):
Our doctor is available at all times, and it’s in English, Yiddish, Polish, and Russian. And it’s actually something that used to hang at a DP camp. I’m pretty sure, kind of, because it, over in the corner, it’s there’s a HIAs sign, which is an organization that, that that helped Jewish refugees resettle.
Jacquelyn Cobb (02:19):
Wow.
Paul Goldberg (02:19):
So it’s I bought this maybe 30 years ago, maybe a little longer, actually, longer ago in Baltimore, the junk shop for, whoa, I even remember how much I paid, how much? 225. But I also bought everything else they had from that collection. So it’s all over the house. It’s really pretty amazing. Wow. That here’s something that is, you know, a piece of history and it’s of refugees in America. It’s yeah, I usually have been using another spot in, in the home office home and office, but this is now kind of felt, felt like a good background to use again.
Jacquelyn Cobb (03:07):
Yeah, well, true. But you all, I mean, you are painting your house, too. I know you had a debacle this morning with your puppy dog.
Paul Goldberg (03:12):
Yeah, yeah, yeah. Dogs getting into paint and walking around is really fun.
Jacquelyn Cobb (03:17):
Leaving footprints on carpet.
Paul Goldberg (03:18):
That’s why we’re here. How, how was your weekend, <laugh>?
Jacquelyn Cobb (03:22):
I think it was good. I this is my second night in Portland, Maine. It looks like the exact same background, but I am in a new apartment, a new state. So I yeah, it’s really beautiful. It’s so blessedly quiet here. I am so happy. There’s no traffic noises. It’s just birds. I am in heaven. It’s amazing.
Paul Goldberg (03:41):
The yeah, Maine is fabulous, and what a great city.
Jacquelyn Cobb (03:45):
Yes, yes. I’m very excited to explore more. I gotta get my library card tomorrow. That’s my, my first point of action point of business. So I will take us through last week’s headlines. Our cover story was another episode of the Directors which is a special segment of the Cancer Letter podcast. This is the sort of aim, the angle of the directors is asking cancer center directors, what keeps them up at night. And so this was, this one was no different. We had Candace s Johnson, president, and CEO of Roswell Park, ca, comprehensive Cancer Center. And Jonathan w Friedberg, director of University of Rochester, Wilmot Cancer Center on the podcast this time. So definitely a really good episode. I don’t wanna repeat too much of what we said in the actual director’s podcast, but definitely worth checking out.
(04:31):
Really interesting conversation between two Upstate New York Cancer Centers. Claire wrote a story about NIH Director Jay Bhattacharya, appearing before the Senate Appropriations Committee to discuss President Trump’s proposed NIH budget. Very like all of the hearings, high drama a lot of emotions flying high with the cuts being proposed and other general upheaval at NIH. We also had a story about the first NCAB meeting since Trump was inaugurated, where principal Deputy Director Douglas Lowy, gave a long awaited inside, gave long awaited in information on what’s happening at NCI. Nothing hugely surprising, I would say, coming out of that, but it was still good to just hear it directly from NCI since that’s been sort of lacking since the inauguration. And then I wrote a story about a recent observational study examining the link between cannabis use disorder and cancer mortality rates, which is pretty interesting.
(05:30):
And our cancer policy section was jam packed with important stories. As always. We covered the widely covered Bethesda Declaration which was a letter of dissent from NIH employees and Nobel Laureates to NIH, director b as well as other stories in that section. So definitely worth checking out as well. Yeah, lots, lots to talk about, Paul. I know. The, the main thing I wanted to start with and I talked about this a little bit with you off camera is the fact that the NCAB in NCAB meeting, excuse me was, you know, recorded, it was virtual and typically they come up in the past events section on their website a few days later. And it did come up a few days later, the recording, and I was able to catch it and transcribe it and write the story. But now it’s nowhere to be found. I don’t know why they took it down. And also technically, the NCAB meeting that day was supposed to have two meetings. The second one was very brief. It basically just had a second set of remarks from Dr. Lowy. So I don’t think we missed anything crazy, but that one never appeared on the website at all. In terms of the recording, so just kind of a weird situation. I, there
Paul Goldberg (06:48):
Used to be, there was supposed to be two meetings back to back, ’cause one that was missed. And so statutory sort of requirement was to have that. And it is a chartered advisory committee covered by Federal Advisory Committees Act. And it’s also an advisory committee that is a part of NCI a part of the National Cancer Act. So the idea that, and, and it’s not like we were lazy, which we most certainly were not. And, you know, I would’ve been there had it been an in-person meeting ’cause I, I love going to those meetings. But the reason we, it was all virtual, so the only record of this thing doesn’t seem to be accessible. I, maybe a few years ago really a few months ago, we would’ve made a big deal out of this because this is record, this is public record. That’s what we do.
Jacquelyn Cobb (07:56):
Yeah.
Paul Goldberg (07:56):
We may yet, I mean, we’re going to follow up. I dunno how big a deal we can make out of it. I, I just remember messing with the record. Like, for example, there was this one very famous I think it’s famous, it’s famous in my mind case, where an NCI director who, whom actually, who is actually a hell was a hell of a great one. I don’t wanna repeat the whole story, <laugh> but he dropped an F-bomb, okay?
Jacquelyn Cobb (08:26):
Mm-Hmm <affirmative>.
Paul Goldberg (08:26):
Great. It was a perfectly reasonable thing to do under the circumstances. But what made that a story for us is that the F-bomb and the whole statement around it was how has somehow taken out of the of the audio.
Paul Goldberg (08:49):
So we do watch these things and we do care about these things, and I think the world needs to have these things. Yeah. so having an entire two meetings missing, I sure as heck hope they find them. But oh, again, this is something that’s of great importance to us and probably not many others.
Jacquelyn Cobb (09:10):
Yeah. Well, I’m sure it’s yeah. Other
Paul Goldberg (09:14):
Bigger problems. Well, that’s, yeah,
Jacquelyn Cobb (09:17):
That’s the thing.
Paul Goldberg (09:17):
So, and you have to kind of select what, what, what you want to spend your time on. And I think we did not make enough noise. I think it becomes a bigger story this week. So in, in case somebody from NIH is watching this, they might wanna know, you know, be advised that we’re going to do a story, and if there’s anyone there who can respond to them, who is still employed by NIH we will ask.
Jacquelyn Cobb (09:49):
Yes. So totally. Unless it shows up, which would be the ideal situation,
Paul Goldberg (09:53):
Oh God, that would be wonderful. Yes. Yes. Even if the thing is not really that important. I think the first meeting, the one you wrote about was actually quite important. Maybe you could talk about it.
Jacquelyn Cobb (10:03):
Dr. Lowy had his introductory remarks and that’s where he sort of touched on some of the things that are on everybody’s mind. He, he discussed indirect costs but, you know, it’s, it’s nothing sort of out of the ordinary from what I understand. He said that NCI will continue to use previously negotiated and approved indirect cost rates except for awards under which FNA costs are reimbursed at a fixed rate, which again, like I, I mean, again, I’m kind of new to this, but Paul said that you said that that was kind of business as usual, right?
Paul Goldberg (10:34):
Yeah,
Jacquelyn Cobb (10:34):
Yeah. On the NIH budget and how they were sort of gonna work with the potentially limited budget. He said that that’s basically the thing that they’re working on right now. You know, they have 30 plus leadership members of the leadership team, like literally just trying to work through that. So he did say within that, that the extra extramural colleagues are definitely sort of a priority there. And that ultimately a vast majority of funding goes to them. So, again, nothing, you know, crazy, but just good to hear from, you know, his perspective. And then more of like an administrative question. But I think still interesting, again, sort of in line with what we’re saying in general with like, you know, having this on record, but John Carton, the chair of NCAB and who is also the director of City of Hope Comprehensive Cancer Center, he asked if other future NCAB meetings are gonna be like the one that was held on, I think it was Tuesday.
(11:33):
Yeah. because it was very abbreviated. There was no legislative report. It just didn’t really look like a typical NCAB meeting. So he was wondering if, you know, is this the future of NCAB meetings or is it gonna be sort of return to normal at some point? And Loie really just didn’t have a solid answer at this point. I think everything’s up in the air, but he mention that legislative activities may be sort of centralized to more of a an NIH umbrella rather than just NCI. So maybe that will be not necessarily part of the NCAB meetings going forward. But again, we don’t know for sure at this point. Something interesting that happened is that there was a formation of a new NCAB ad hoc working group in the wake of three Federal Advisory Committee Act committees. <Laugh>,
(12:22):
That’s not a typo or anything, that’s not a mistake. That’s actually what it’s called, FACA. Yep. in the wake of the elimination of these committees Dr. Lowy said that it might be useful to have a potentially larger group of people available for reviewing new concepts. So the BSA, the Board of Scientific Advisors, was one of those committees that was eliminated. And they’re this sort of reviewing new concepts was typically under their purview, but still nothing, not a huge change. The NCAB is still responsible for submitting, you know, the actual recommendations and voting on these concepts. But they’ll just have more sort of advice and insight from this ad hoc working group that is being formed. That’s what he said, at least,
Paul Goldberg (13:07):
Which is important. Peer review is the most important thing there is. It’s the opposite of peer review is favoritism and cronyism. So it would be very nice to have that. It was also interesting in the story that, that that Dr. Lowy cited the cited the cancer statistics Yeah. Which was, for some reason that’s kind of a kind of a controversial thing to do these days. It’s a measure of the times that we can’t measure the times.
Jacquelyn Cobb (13:49):
Yeah. Yeah. He said that the three decade decrease in cancer mortality rates has continued to the most recent year that we have data, which is 2023,
Paul Goldberg (13:58):
The registries within CDC. And I, I think we really need to just look at it in a comprehensive manner, because there’s also some stuff happening at the va.
Jacquelyn Cobb (14:08):
Yeah.
Paul Goldberg (14:09):
So pretty soon we just, if this goes forward, which I don’t know if it will or won’t, depends on Congress. We might actually not have cancer statistics and that would be reliable. And the United States has had the, the, the cancer statistics collected within the United States or the entity of the world. So yeah, that would be a big loss.
Jacquelyn Cobb (14:42):
Yeah.
Paul Goldberg (14:42):
So we’ll be fighting an unknown enemy, and I, I’m not so sure I understand why.
Jacquelyn Cobb (14:48):
Yeah. <laugh>
Jacquelyn Cobb (14:50):
I mean
Paul Goldberg (14:52):
I, ours is not to guess. But, but the not, but it certainly is not something that makes any sense to me at least. I don’t know if it makes sense to you. Does it?
Jacquelyn Cobb (15:08):
Imagine if I said yes, I was like, it makes total sense,
Paul Goldberg (15:10):
<Laugh>. Oh, yeah, it does. Yes, of course. Get rid of the data. But I mean, the first on the first day president Trump cited data that appeared to have been kind of kind of interpreted, I guess for the lack of a better word cooked is the word that Thank you. <Laugh>,
Jacquelyn Cobb:
You’re welcome.
Paul Goldberg:
In Wuhan, in Wuhan China. So I that, that was seemed significant that that executive order would, would would feature wuhan fried data.
Jacquelyn Cobb (15:59):
Yeah.
Paul Goldberg (16:00):
So I think it’s probably very significant.
Jacquelyn Cobb (16:04):
Yeah. Yeah. Totally. And I mean, that’s definitely, both me and Claire have sort of stories about cancer registries in the works. That’s definitely something important to cover. Yeah, like, like you said though, Paul, there’s just so much to cover and you have to sort of pick, I mean, not even pick like we’re, we are picking this, but it’s just a matter of, you know, time in the day <laugh> to write all of it down. So you,
Paul Goldberg (16:27):
You actually ended up pulling an all-nighter I think I suspect on, on Thursday to Friday.
Jacquelyn Cobb (16:35):
Not quite an all-nighter, but, but close. Yeah. I am. I’ve been doing that pretty regularly at this point. But we have to write it like we have to, I don’t know, it’s the first time in my journalistic career, very short journalistic career that it feels like we really have to be writing this stuff down. We have to be recording it. It’s really of, I don’t know, like, like people’s lives are at stake, you know? And I, I don’t know. It’s, it’s definitely a motivating factor. It keeps me up to write <laugh>, which I’m happy for. <Laugh>.
Paul Goldberg (17:02):
What else have we missed?
Jacquelyn Cobb (17:05):
I think that’s it, honestly, Paul, I think, I think we’re in good shape. I think we covered the issue pretty well. If you wanna hear more or read more, definitely check it out. There’s a lot more detail in the, in the issue. But other than that, just
Paul Goldberg (17:17):
Well, I did think of something okay, last week. Last week, one of the reasons we were all really shorthanded
Jacquelyn Cobb (17:26):
Hmm.
Paul Goldberg (17:26):
Is that the whole team met in Washington at the Edward R. Murrow Room at the National Press Building.
Jacquelyn Cobb (17:32):
Yes.
Paul Goldberg (17:34):
And the, because we won a bunch of awards.
Jacquelyn Cobb (17:38):
Yay!
Paul Goldberg (17:39):
Like, you won an award for investigative.
Jacquelyn Cobb (17:42):
Yeah, yeah.
Paul Goldberg (17:44):
Which is no small thing.
Jacquelyn Cobb (17:45):
Yeah. I’m very excited.
Paul Goldberg (17:48):
I won.
Jacquelyn Cobb (17:50):
You won photography, right? Photography story.
Paul Goldberg (17:52):
It’s just hilarious. But it wasn’t my photography, but I did write a photo story to go with the photography about the attack on the pediatric hospital in Kiev.
Jacquelyn Cobb (18:02):
Yeah.
Paul Goldberg (18:03):
So
Jacquelyn Cobb (18:04):
Yeah. And Claire won. Claire won against you, Paul. That was the funniest
Paul Goldberg (18:08):
Story. Yeah, that was great. That was great. We were up against each other. It was great. I was, I was rooting for her and she was not rooting for me. I’m sure <laugh> <laugh> probably. She’s not here to defend herself. <Laugh>. So I guess Jacqueline, this is becoming a Jewish goodbye where where everybody says goodbye and nobody leaves.
Jacquelyn Cobb (18:31):
Yep.
Paul Goldberg (18:32):
Yep. <Laugh>. so
Jacquelyn Cobb (18:35):
Shall we say goodbye properly? Should we do an Irish goodbye? We can just <laugh>.
Paul Goldberg (18:40):
This is a great time to be a journalist, as always. Thanks, Paul.
Jacquelyn Cobb (18:46):
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@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 (19:06):
Until next time, stay informed, stay engaged, and thank you for listening.
