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?

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.

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 

A transcript of this podcast is available: https://cancerletter.com/podcastc/20250430-cancer-registries/ 

A confidential Trump administration budget document obtained by The Cancer Letter called for a 40% budget cut to NIH and a restructuring of the 27 existing NIH institutes and centers down to just eight. But what else is in it?

In this week’s episode, Paul Goldberg, editor and publisher of The Cancer Letter, and Jacquelyn Cobb, associate editor, talk about other ways the 64-page budget document may impact cancer research. 

It seems that the cut to FDA was very small, Paul said. However, the budget would zero out the 21st Century Cures Act. 

“If that indeed happens, FDA will not be able to hire people at salaries that were never competitive anyway, but at least they were kind of getting towards competitive,” Paul said. “But compare it with the salary of a dean somewhere, and you're getting into like 30% of what somebody like that earns. So, it becomes kind of a very difficult place to go work.”

The other, more concerning potential impact of the budget? CDC’s grants for state cancer registries is nowhere to be found. 

“I am not seeing something that kind of freaks me out, which is I'm not seeing the grants for cancer registries grants to states,” Paul said. “Now, the United States has what is viewed as one of the world's greatest, if not the world's greatest, cancer statistics/cancer epidemiology/data gathering apparatuses anywhere.

“This was built since roughly about 25 years ago, when states started receiving these grants. It covers about 97% of the country. And I'm not seeing that in there. This is something that CDC operated, so what does that mean? I don't know yet. I hope to find out.”

Other stories mentioned this week include:

• The Directors: Louis Weiner and Taofeek Owonikoko on keeping up morale amid uncertainty—“We are resolute. We are committed to continuing to move the work forward.”

• RFK Jr. urges FDA staff to resist “agency capture” by special interests and resist “deep state”—Whistleblowers will be “honored”

• TIL + pembro regimen achieves 24% response rate in solid epithelial tumors, marking a step forward in immunotherapy research

• What would Mary do? Trump’s actions call for Lasker-style advocacy

A transcript of this podcast is available: https://cancerletter.com/podcastc/20250423-budget/ 

“We are resolute. We are committed to continuing to move the work forward,” said Louis M. Weiner, director of Georgetown University’s Lombardi Comprehensive Cancer Center. 

Taofeek Kunle Owonikoko, executive director of the University of Maryland Marlene and Stewart Greenebaum Comprehensive Cancer Center, recalled recent conversations with two junior faculty members. 

“I had to reassure them, ‘Yes, we’re not reneging on our commitment,’” Owonikoko said. “It’s a challenging phase that we’re all going through, but we’re going to get through this. So, we have to help give them that cushion, that support, that level of at least some degree of certainty for them to keep plugging at this.”

Weiner and Owonikoko appeared on the latest episode of The Cancer Letter Podcast, as part of a monthly series called The Directors, which focuses on the problems that keep directors of cancer centers up at night. 

A transcript of this episode is available: https://cancerletter.com/podcastc/20250418_1/ 

Up to 80% of adolescents and young adults with cancer are affected by reduced fertility after treatment—but only 50% received oncofertility counseling and preservation options prior to beginning treatment.

In this episode of In the Headlines, Jacquelyn Cobb, associate editor of The Cancer Letter, and Claire Marie Porter, reporter, talk about how oncofertility, now a standard of care, is often overlooked. Claire’s story highlights the experiences of two young adult survivors with the same diagnosis—one who received oncofertility counseling and one who did not.

“Getting a cancer diagnosis when you're a young person is very shocking. There's so much to talk about. And when it comes to osteosarcoma, usually the treatment has to begin right away,” Claire said. “So, if that conversation doesn't happen within a couple of days, there's not much you can do”

In the U.S., cancer affects 89,500 adolescents and young adult patients, often called AYA patients, annually.

An estimated 70–75% of AYA cancer survivors are interested in parenthood, but only half of them report getting oncofertility counseling and preservation options prior to their cancer treatments, according to results of a cross-sectional study: Patient-Reported Discussions on Fertility Preservation Before Early-Onset Cancer Treatment, published in JAMA Network Open.

Other stories mentioned in this podcast include:

• Banished from the institute he founded, separated from his lab materials, Tom Curran sues Children’s Mercy—Whistleblower lawsuit alleges wrongful firing 

• Tom Sellers steps down as director of OHSU Knight, replaced by Lisa Coussens. Shivaani Kummar recently named interim CEO 

• Guest editorial by InformedDNA’s Ashely Cannon: Genetic counseling can improve genetic screening and accelerate clinical trial success

• Thomas B. Tomasi Jr., Roswell Park president and CEO from 1986 to 1996, dies at 97

• Obituary by Jerome Yates: Tomasi revived basic and clinical research at Roswell Park 

A transcript of this podcast is available: https://cancerletter.com/podcastc/20250416-oncofertility/

In the absence of the federal funding, cancer research will be leaning on private funders. But few private funders have the freedom to ask fundamental questions—questions whose answers may not have an immediate clinical impact but can dramatically advance scientific knowledge. 

In this episode of In the Headlines, Paul Goldberg, publisher of The Cancer Letter, and Jacquelyn Cobb, associate editor, talk about the differences between private and federal research questions, and their interviews about cancer research funding with Karen Knudsen, CEO of the Parker Institute for Cancer Immunotherapy, and Brian Druker, professor of medicine and JELD-WEN Chair of Leukemia Research at Oregon Health & Science University Knight Cancer Institute.

“Foundations play a role in focusing research collaborations and so forth, and changing the direction of research,” Paul said. “Yes. But they cannot do what the federal government has always done, and there is no substitute for NIH. So if anybody wants to destroy NIH, there will be nothing to replace it except disease.” 

Stories mentioned in this podcast include:

• Karen Knudsen tells us why she took the CEO job at the Parker Institute for Cancer Immunotherapy

• Amid HHS upheaval, Bhattacharya takes the helm at NIH, Makary at FDA Meanwhile, NASEM sounds “SOS” for health infrastructure

• Brian Druker, developer of Gleevec, eyes a new feat: Setting the Boston Marathon fundraising record

• Rathmell: We must put the individual at the center of our approach to ending cancer    

A transcript of this podcast is available: https://cancerletter.com/podcastc/20250409-research-funding/ 

“For the last 50 years every major medical breakthrough can be traced back to investments in the NIH, which houses the National Cancer Institute (NCI),” said Wayne A. I. Frederick, interim chief executive officer of American Cancer Society and the American Cancer Society Cancer Action Network.

In this episode of In the Headlines, Jacquelyn Cobb, associate editor of The Cancer Letter, and Claire Marie Porter, reporter, talk about the sweeping changes at HHS they reported on for last week’s story: Kennedy announces massive cuts, centralization at HHS—NCI and FDA hit. 

These changes, which include centralization, consolidation of departments, and another 10,000 firings of employees from across agencies, come at a time when new leadership is stepping into their roles as directors of NIH, CDC, FDA, and CMS.

This story really serves as a “documentation,” said Claire. The Cancer Letter included full transcripts of primary documents from HHS on their massive cuts, Robert F. Kennedy Jr.’s instagram video justifying the upheaval at HHS, as well as a statement by ACS CAN critiquing Kennedy’s changes. 

Also in this episode, Jacquelyn gives an overview of what has happened to the Department of Defense Congressionally Directed Medical Research Program grants, and what is unique about the DOD cancer research programs. In recent days, CDMRP funding has been cut by 57%, eliminating the pancreatic, lung, and kidney cancer programs.

“They're just gone,” said Jacquelyn. “And that was really shocking because these were some of the newer programs.” 

Other stories mentioned in this podcast include: 

• Q&A with Wilmot Cancer Institute’s Jonathan Friedburg: Jonathan Friedberg tells us how he built a cancer center in an underserved area of New York State

• DOD cancer research programs face 57% funding cut in year-long continuing resolution

• Breast cancer activists in the 90s got DOD to fund cancer research—now that program has been gutted 

• Guest editorial by former NCI director Kimryn Rathmell: We must support our junior colleagues

• Guest editorial by Jedd D. Wolchok, Joshua D. Rabinowitz, and Sohail Tavazoie: Weill Cancer Hub East to investigate connections between metabolism and anti-tumor immunity

A transcript of this podcast is available: https://cancerletter.com/podcastc/20250402-hhs-shakeup/

In this episode of the Cancer Letter Podcast, all three of The Cancer Letter’s reporters come together to talk about the potential impact of President Donald Trump’s tariffs on cancer care.

Claire Marie Porter, reporter with The Cancer Letter, Jacquelyn Cobb, associate editor and reporter, and Paul Goldberg, editor and publisher, discussed last week’s story, “Trump’s tariffs will likely affect cancer drugs and devices—and may deepen drug shortages.”

The effects are wide-ranging and pretty uncertain, Claire said. But the cost of raw materials for drugs has already risen since the tariffs have been imposed, and health economists are predicting that the tariffs—if healthcare and medical goods are not exempted—will lead to shortages of generic drugs and higher costs in the branded drug space.

If shortages of generic drugs worsen, there's no question that there would be direct harm to patients, the American Society of Clinical Oncology’s Julie Gralow said in the story.

“Direct harm to patients means pretty direct. I mean, it's death, in a lot of cases,” Paul said. “If you didn't get the platinum drugs or 5FU or what have you, well, you can actually show how many patients died. It affects pediatric patients even.”

Other stories mentioned in this podcast include:

• Guest editorial by Shannon McWeeney and Sorena Nadaf-Rahrov: Caught in the crossfire: The critical threats facing cancer centers, research, and patient care

• Columbia’s cancer center becomes collateral damage in Trump’s war on antisemitism

• Guest editorial by Former NCI Director Kimryn Rathmell: We need a “March Madness” for cancer research—“Cancer is a tremendously challenging tournament, but we are in it to win”

• Guest editorial by Jamillah Hoy-Rosas: Health innovation and health equity: Ensuring technologies advance resilience, justice, and compassionate care

A transcript of this podcast is available: https://cancerletter.com/podcastc/20250326-tariffs/

With a growing backlog at NIH and Columbia University’s grants getting canceled over alleged antisemitism, where does that leave NCI-designated cancer centers?

Paul Goldberg, editor and publisher of The Cancer Letter, and Claire Marie Porter, reporter, discuss this and more on the latest episode of The Cancer Letter Podcast.

Stories mentioned in this podcast include:

• The Directors: Ray DuBois and Roy Jensen on how COE guides cancer care in rural America

• Backlog of work grows at NIH as staff members are being hounded to quit

• Kimryn Rathmell: My mentor recognized a cliff I was going to fall off before I did

• Guest editorial by Shine Chang, Michaela A. Dinan, and Miria Kano: In support of three coordinated CCSG components reducing our national burden of cancer

• Guest editorial by William Pao: New drugs don’t appear out of thin air 

A transcript of this podcast is available: https://cancerletter.com/podcastc/20250319/

In March 2025, the dawn of the Trump era, what's keeping cancer center directors up at night? What's it like to be a director of a cancer center now?
In the second installment of The Directors, a series on The Cancer Letter Podcast, we asked Raymond DuBois, director of the Hollings Cancer Center in Charleston, South Carolina, and Roy Jensen, director of The University of Kansas Cancer Center, what being a cancer center director is like right now.
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.
DuBois, Jensen, and Brawley spoke with Paul Goldberg, editor and publisher of The Cancer Letter.
This episode is sponsored by the American Society of Clinical Oncology. ASCO plays no role in the editorial direction of this podcast.
An article about this episode, featuring a full transcript, is available: ⁠https://cancerletter.com/podcastc/20250314_1/⁠

President Trump’s nominee for NIH director extolled the importance of transparency—just days after HHS rescinded a Nixon-era policy intended to enhance it. 

Paul Goldberg, editor and publisher of The Cancer Letter, and Jacquelyn Cobb, associate editor, discuss Jayanta Bhattacharya’s stance on the mass firings sweeping through HHS, Trump’s proposed cap on indirect costs, and more this week on The Cancer Letter Podcast.

During his confirmation hearing before the members of the Health, Education, Labor, and Pensions Committee March 5, Bhattacharya listed his five primary goals at NIH:

• Chronic disease

• Reliability

• Scientific dissent

• Innovation

• Regulation of gain-of-function research

As for the questions on everybody’s minds:

When asked about mass firings, Bhattachharya said he has no intention of firing anyone at NIH. 

And in regards to indirect costs, Bhattachharya does not think the system needs to be reworked. Instead, he believes increased transparency, including audits of university spending of indirect costs, would help reduce distrust about where the money goes. 

Other stories mentioned in this podcast include:

• Survey reveals most Americans are uninformed about HPV. A vaccine can prevent cancer—most people don’t take it

• Column from former NCI Director Kimryn Rathmell: Raising awareness—for everyone

• Regeneron Science Talent Search finalists press on at a time of uncertainty

• Guest editorial by Michael P. Castro: The new therapeutic imperative in cancer management: Sequence, biosimulate, treat

• Fred Hutch marks “50 years of doing hard things”

A transcript of this podcast is available: https://cancerletter.com/podcastc/20250312-bhattacharya/