The Cancer Letter has covered—and will continue to cover—all the ways in which the current administration is fundamentally reshaping cancer research in the U.S. But this week, The Cancer Letter and the podcast focused on a patient story.
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 Jacquelyn Cobb, associate editor highlight a profound success story of cancer research: Jacquelyn’s recent story, “Kelly Spill opted for dostarlimab trial, avoiding rectal cancer treatment that would leave her infertile. Six years later, she is well—and pregnant with her third child,” against the backdrop of some of the major changes that have taken place in the last week, including NIH eliminating the NCI Board of Scientific Advisors.
“We have heard from President Trump about all of this,” Paul said. “We have heard from Elon Musk, we have heard from cancer center directors, from Republicans and Democrats in Congress. But what we have not heard was how is all of this affecting patients? What’s at stake? So, anytime we now can have a patient voice and actually tell a story about how dramatically benefited this person is, then we should put it on the cover. We should blast the trumpets on this one. The American people need to hear that.”
Kelly Spill was diagnosed with stage 3 rectal cancer at age 28, less than a year after she gave birth to her first child. The standard-of-care treatment for locally advanced rectal cancer—chemotherapy, surgery, and radiation—would have left Spill infertile. Having a big family was a high priority for Spill, and she was devastated by the news of her likely infertility as a result of her cancer treatment.
After six months of treatment with dostarlimab, Spill’s tumor disappeared. She has been cancer-free since August 2020. Also—Spill was able to get pregnant. Twice. She is due with her third child May 14.
Ironically, the researcher who spearheaded the clinical trial that cured Spill—Luis Diaz, head of the Division of Solid Tumor Oncology in Memorial Sloan Kettering Cancer Center’s Department of Medicine—also appeared in another story from last week.
Last week, The Cancer Letter reported that Diaz was removed from the National Cancer Advisory Board, which advises and assists the NCI director in shaping the direction of the national cancer research program.
“There’s nothing more important in science than how you get advice and whom you get the advice from,” Paul said.
Other stories mentioned this week include:
- Neoadjuvant dostarlimab averts brutal surgery in 80% of patients with dMMR solid tumors
- The White House “skinny budget” document cuts NIH by nearly 40%—The cuts are consistent with the previously leaked “passback” document
- NIH eliminates the NCI Board of Scientific Advisors—Over its 28 year history, BSA shaped NCI-funded extramural science
- NIH cuts threaten U.S. edge in biomedical research: “We are giving China the opportunity of a lifetime.” Cancer research also took center stage at Senate appropriations hearing
- Bertagnolli: NIH funding cuts are “unprecedented and harmful”—AACR panel challenges scientists to find stability in a period of “ventricular tachycardia”
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: This week on the Cancer Letter Podcast…
Paul Goldberg: NCI needs a director fast, because I don’t know if anybody’s fighting back, or saying, “Hey, this is necessary.”
Jacquelyn Cobb: Yeah, yeah.
Paul Goldberg: I don’t think anybody really knows or cares. Maybe they do, but I’m not aware of it.
Jacquelyn Cobb: I’m sure people care. I mean, the BSA story is our top story from last week. I think a lot of people are aware of it. But what can they do? You know?
Paul Goldberg: It’s going to be easier for directors, or whoever, to avoid peer review. That’s going to be fun to cover. I mean, this is a great time to be a journalist. It’s getting better and better every week.
Jacquelyn Cobb: Oh my gosh, yeah. There’s more and more to cover. We can say that, for sure.
Paul Goldberg: Yeah, we are certainly not bored.
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? How was ACR?
Paul Goldberg: Hi, Jacquelyn. Well, it was great. It was just great to see old friends and just chat to folks. And it’s always great to go to ACR and ASCO.
Jacquelyn Cobb: Yeah, you always have fun at those meetings.
Paul Goldberg: Well, as do you.
Jacquelyn Cobb: Yeah. Fine. Fair.
Paul Goldberg: Yeah.
Jacquelyn Cobb: But yeah, last week was crazy. I can’t wait to dive into the stories. But after literally being, you were at ACR until Tuesday, and then we had a crazy workload already, and then on Friday we had an unexpected twist of events that we can maybe allude to and tell the listeners in a bit.
First, I will dive into the stories from last week, the headlines. We had a cover story of one of the ACR plenaries, that also had a New York Times cover. Really, really exciting finding out of MSK, Memorial Sloan Kettering, excuse me, of neoadjuvant dostarlimab preventing surgery in 80% of patients with mismatch repair deficient solid cancers. So this is the drug that had a hundred percent response rate in rectal cancer, dMMR rectal cancers. And this new section of the trial expanded that to all, or a pan-cancer analysis of dMMR cancers. And it had this 80% rate of averting surgeries that can lead to infertility, colostomy bags, really serious quality of life changes. So that was really, really exciting. Really fun story to write. Really exciting to have that on the cover.
And the second story, our story two, was one of the original patients from the original rectal cancer trial, she was the patient number four, so really one of the originals, her name was Kelly Spill, and she opted for dostarlimab instead of going through the standard of care, which would have been chemotherapy, surgery, and radiation that would have left her infertile.
And having a big family was a huge priority for her, and she decided to go ahead with this. Was one of the patients that had complete clinical response. Six years later, she still is cancer free, and she is pregnant with her third child. So, very heartwarming story. Incredible. Really lovely to speak with her.
We also then had the White House “skinny budget,” which is what I was alluding to earlier, which that came in on Friday, I think, what time was it, Paul? Like 1:00 PM? 12:00 PM?
Paul Goldberg: Yeah, early.
Jacquelyn Cobb: Yeah, we’re usually wrapping up at 1:00 PM, and we got in this news break. And we had to write the story, report it. And thank God we did, because it was really important. Just to be fair, it’s not the final version of the budget. That’s coming out at the end of this month. But it basically falls in line with the passback budget that we wrote about two weeks ago? A week ago?
Paul Goldberg: Mm-hmm.
Jacquelyn Cobb: So pretty intense budget cuts at NIH. Yet to be seen how they affect NCI. Claire covered the first full Senate appropriations committee hearing since the start of the presidential term, which is really a strong story. Definitely check it out.
And Claire also covered the session at AACR that featured Monica Bertonioli and Kim Rathmell about the NIH funding cuts being unprecedented and harmful to cancer research, and scientific research in general. So yeah, Paul, over to you kind of. We have a lot to cover today. A lot to talk about.
Paul Goldberg: Yeah, we do. There’s also, fact is that BSA is gone.
Jacquelyn Cobb: Well, yeah, I mean, that’s our main… That’s what we’re going to dive into.
Paul Goldberg: I actually want to wait with that.
Jacquelyn Cobb: Yeah.
Paul Goldberg: I really want to talk about something else, if you don’t mind. We have heard from President Trump about all of this. We have heard from Elon Musk, we have heard from cancer center directors, from Republicans and Democrats in Congress. But what we have not heard was how is all of this affecting patients? What’s at stake? So anytime we now can have a patient voice and actually tell a story about how dramatically benefited this person is, then we should put it on the cover. We should blast the trumpets on this one. The American people need to hear that.
Jacquelyn Cobb: Yeah, yeah, and we were really lucky to have a very happy story as our patient story this week. But I think it’s something we need to continue, is really highlighting how it’s affecting patients. The stories are not all this heartwarming. They are not all this positive. So definitely, I totally agree, Paul.
Paul Goldberg: Yeah, and you look at something like the end of the dissolution, or likely dissolution of tumor registries, cancer registries in the States. We won’t know-
Jacquelyn Cobb: Yeah, we won’t know.
Paul Goldberg: … the damage being done. And that’s, how do you rebuild that? You will need to rebuild that. Or BSA, right? BSA-
Jacquelyn Cobb: Yeah, let’s talk about that.
Paul Goldberg: … is probably the most… Actually, we’ll back up some more.
Jacquelyn Cobb: Yeah, yeah, yeah, let’s go.
Paul Goldberg: BSA, when you think about it, there’s nothing more important in science than how you get advice and whom you get the advice from. And here’s a group that’s been running, giving advice to the NCI Director on extramural programs.
Jacquelyn Cobb: For 30 years.
Paul Goldberg: There are other groups. I think there’s a lot more that is happening, that we haven’t really caught up with, as they were flooding the zone. And there’s more to that. But speaking of advice, the National Cancer Advisory Board, which is mandated by the National Cancer Act of 1971, had at least one member was bounced off that. And that happens to be Luis Diaz, who is the guy who spearheaded the trial that cured the patient that we’ve just heard from?
Jacquelyn Cobb: Yep.
Paul Goldberg: I have no idea why he was bounced off that board. Nobody really does. I went through the databases to see if he gave a ton of money to Democrats, and I’m not seeing that at all. I’m not seeing him giving money to Democrats, or for that matter, Republicans. So whatever reasons they had for bouncing this person off, I don’t know what they are.
Jacquelyn Cobb: Yeah.
Paul Goldberg: Think about it, how many people do you know who have actually cured a disease?
Jacquelyn Cobb: Like four or three.
Paul Goldberg: I know a few.
Jacquelyn Cobb: You do.
Paul Goldberg: Yeah. Well, no, you do too.
Jacquelyn Cobb: I know one. Yeah.
Paul Goldberg: Yeah, so it’s like, yes. So this would be exactly the one you’re talking about. You’re talking about Brian Drucker.
Jacquelyn Cobb: Yep. Yep.
Paul Goldberg: Yeah, it would be like, “Yeah, you don’t want to hear his advice?”
Jacquelyn Cobb: I know. I know.
Paul Goldberg: What’s wrong with you?
Jacquelyn Cobb: Yeah, what could the logic possibly be there? Yeah.
Paul Goldberg: Yeah, I hate to even start to speculate. I don’t know.
Jacquelyn Cobb: Yeah. Well, why don’t we start with, why don’t we tell the BSA, what your story about BSA actually was, for people who haven’t read the issue yet.
Paul Goldberg: Yeah. Well, BSA is a 28 member board that no longer will meet. I don’t understand why not. I don’t know how much money they’re saving from this. If you just move it to Zoom, you might save $10. No, it won’t be even that much.
Jacquelyn Cobb: Yeah.
Paul Goldberg: Well, no, there are special government employees. I have no idea. Or you can just have them waive their fees if you want to. I have no idea how the legality of that works, but you’re really not talking about… Hundreds of dollars will be saved at each meeting. So it’s totally, I’m not sure.
And then advice is not going to be there. We have not done compare and contrast of the boards, but I know that Liz Jaffee is no longer on the President’s Cancer Panel. Also, another person whose advice you probably benefit from.
Jacquelyn Cobb: Yeah, yeah, to say the least.
Paul Goldberg: Really. But I haven’t done a compare and contrast. I’m going to do. We’re going to try to do that this week. And I also don’t know who else was bounced off NCAB. So if you’re listening and you’ve been bounced off NCAB, please send me an email, or a text, or call me, or send a carrier pigeon.
Jacquelyn Cobb: Any of the above.
Paul Goldberg: All of the above. Because redundancy is good.
Jacquelyn Cobb: Don’t tell that to DOGE.
Paul Goldberg: Yes, indeed. Much more efficient now. Not getting advice is always efficient. Not having data about incidents of cancer is always good. Mortality as well, it’s all, we saved a lot.
Jacquelyn Cobb: I know that you’re going to be covering… Well, we’re also going to be covering where is NCI now, talking about Liz Jaffee, the other stuff that’s in the pipeline. But just to go back to BSA for a sec, can you talk about, I know, obviously, they’re not going to be getting that advice, because it’s no longer there, of course. But didn’t someone say that it’s going to be absorbed into something else? What was it, Paul?
Paul Goldberg: Oh, they can convene ad hoc groups of advisors.
Jacquelyn Cobb: Yeah.
Paul Goldberg: Yeah.
Jacquelyn Cobb: And what is the implication there? Do you know?
Paul Goldberg: I have no idea. But there was something in the statement from an NIH, which I also do not understand, and will try to. No promises, because it may not be understandable. There’s something called the NCI committee convened.
Jacquelyn Cobb: Yeah, that’s what I’m-
Paul Goldberg: I’ve never heard of NCI committee. It’s certainly not in the National Cancer Act. It’s not anything I’ve ever heard of before.
Jacquelyn Cobb: Is it the NCI Council? Is that what you’re talking about?
Paul Goldberg: NCI council, yeah. I have no idea. If anybody knows, please send carrier pigeons, and faxes, and…
Jacquelyn Cobb: It’s a little…
Paul Goldberg: … telegrams.
Jacquelyn Cobb: What’s the word I’m looking for? Unsettling, when Paul doesn’t know something about NCI.
Paul Goldberg: Well, it hasn’t existed.
Jacquelyn Cobb: Yeah.
Paul Goldberg: You know? I have no idea what any of this means. But we will find out, I promise. The other thing that happened, that’s not in The Cancer Letter this week, but will be in The Cancer Letter next week, is that the National Cancer Institute is now effectively left incommunicado. The entire communications arm of NCI is gone, as of… Or it will be gone. Apparently, they received emails saying that it will be eliminated, effective April 1st, which means it’s already gone. I have no idea. Maybe they just misdated the emails.
Jacquelyn Cobb: A little bit.
Paul Goldberg: But I don’t know how you make yourself gone a month ago.
Jacquelyn Cobb: That’s efficiency.
Paul Goldberg: It’s an interesting point. But basically, what that means is no more PDQ, no more patient information, no nothing.
Jacquelyn Cobb: Yeah. Can you explain what PDQ is for our listeners, Paul?
Paul Goldberg: Pardon?
Jacquelyn Cobb: Can you explain what PDQ is for our listeners?
Paul Goldberg: Oh, Physician Data Query, which is a discussion of what we know, what we don’t know, what we believe in cancer. Doctors use it a lot. That’s a huge, huge piece of what NCI does. I don’t know what money it saves, probably not very much.
Jacquelyn Cobb: Yeah.
Paul Goldberg: And how much damage it does not to have it? Probably a lot. But we won’t know, because we won’t have any data. So that will be great. It’s really, can we go back to BSA for one moment?
Jacquelyn Cobb: Please.
Paul Goldberg: This is getting really disorderly like.
Jacquelyn Cobb: This is how we actually talk.
Paul Goldberg: But when you think about how BSA came to be, BSA was formed out of the boards of Scientific advisors, of the four divisions of NCI. They were put together by Rick Klausner, 33 or 32 years ago.
Jacquelyn Cobb: Isn’t it 28? I thought it was 28.
Paul Goldberg: Hm? Oh, is it 28?
Jacquelyn Cobb: Was it 28? I thought it was… It’s in the story, but I can take a look.
Paul Goldberg: It’s in the story. Well, let’s look at it.
Jacquelyn Cobb: It says 28 year history.
Paul Goldberg: Yeah, 28 years. Okay, I’m really sorry. Yeah, so it was put together out of boards of scientific advisors of each of the four divisions, 28 years ago, because each of the divisions were having these meetings of the extramural and intramural boards three times a year.
So essentially, the NCI director had to go to these meetings pretty regularly. And what this was, was basically a very siloed system, where you could not draw priorities. You have some really great leads in, let’s say cancer treatment, and nothing much in prevention. So why not move money from one place to another and give advice? I mean, it was not a foolproof system, but it was getting better and better.
People found ways around peer review, which can be pesky. But…
Jacquelyn Cobb: Do I want to know?
Paul Goldberg: It’s in the story. But, yeah, one thing you could do in the old days was set up your pet project as a subcontract of the Frederick Contract. And hundreds of millions of dollars over the years were spent that way, or misspent, depending on… Well, they bypassed the peer review.
But Harold Varmus closed that pretty much. It’s not happening. It hasn’t been happening in a long time. And speaking of Frederick, we have no idea what’s happening there. I’m trying to figure it out, and getting absolutely nowhere. I called the same guy at Leidos, and he says, “Oh, yeah, yeah, yeah, of course. I’ll send you everything.” And then he doesn’t send me anything. So if you work at Frederick, please send the carrier pigeon, a fax, a telegram.
Jacquelyn Cobb: You’re going to be getting a lot of carrier pigeons.
Paul Goldberg: Yeah, telegrams are good. Faxes are the best.
Jacquelyn Cobb: Faxes…
Paul Goldberg: Or just call me. I’m trying to figure out what in the name of what is going on. So we’re not really talking about the issue that just came out, but the issues that will be happening, so-
Jacquelyn Cobb: Yeah, these are the stories we’re thinking about for next week, or this week.
Paul Goldberg: Yeah. But NCI needs a director, fast. Because I don’t know if anybody’s fighting back, or saying, “Hey, this is necessary.” I don’t think anybody really knows or cares. Maybe they do, but I’m not aware of it.
Jacquelyn Cobb: I’m sure people care. I mean, the BSA story is our top story from last week. I think a lot of people are aware of it. But what can they do? You know?
Paul Goldberg: Mm-hmm. It’s going to be easier for directors or whoever to avoid peer review. That’s going to be fun to cover. I mean, this is a great time to be a journalist. It’s getting better and better every week.
Jacquelyn Cobb: Oh my gosh, yeah. There’s more and more to cover. We can say that for sure.
Paul Goldberg: Yeah, we’re certainly not bored.
Jacquelyn Cobb: Yeah. Yes, absolutely.
Paul Goldberg: But the most important thing was your story and your interview with that patient.
Jacquelyn Cobb: With Kelly?
Paul Goldberg: I just read it and cried.
Jacquelyn Cobb: I know.
Paul Goldberg: It’s just so great to see-
Jacquelyn Cobb: It’s so lovely.
Paul Goldberg: … that something wonderful is happening.
Jacquelyn Cobb: Yeah.
Paul Goldberg: And we’re going to put that on page one, every time we see something wonderful happening.
Jacquelyn Cobb: Yes, yes, absolutely. We’re all in agreement on that, have to highlight that first.
Paul Goldberg: Yep.
Jacquelyn Cobb: All right. Well, thank you so much, Paul. Is there anything else you want to say before we sign off?
Paul Goldberg: It’s a great time to be a journalist.
Jacquelyn Cobb: Once again.
Paul Goldberg: Yeah, yeah, yeah. You feed me a straight line, I’m going to respond.
Jacquelyn Cobb: That’s what I’m going to get.
Paul Goldberg: I’m like a dog, you know?
Jacquelyn Cobb: Oh, my gosh.
Paul Goldberg: Say sit, I sit. Say anything else you want to say? I say it.
Jacquelyn Cobb: Good to know.
Paul Goldberg: Sorry.
Jacquelyn Cobb: All right. Well, thank you, Paul. And see you next week, everyone.
Paul Goldberg: All right. Thank you.
Jacquelyn Cobb: 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.
