In The Headlines: What’s up with the U.S. cancer incidence rate?

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In this episode of In the Headlines, Paul Goldberg, publisher of The Cancer Letter, and Jacquelyn Cobb, associate editor, talk about controversial data cited in Trump’s “Make American Healthy Again” executive order that claims that the U.S. has the highest age-standardized incidence rate of cancer globally. But where did that data come from?

This episode is available on Spotify and Apple Podcasts.

In a story in the most recent issue of The Cancer Letter, cancer epidemiologists weighed in on the origin of the questionable data: Trump executive order to “Make America Healthy Again” cites questionable data from Wuhan

The executive order contained this language about cancer incidence in the U.S.:

“Across 204 countries and territories, the United States had the highest age-standardized incidence rate of cancer in 2021, nearly double the next-highest rate. Further, from 1990-2021, the United States experienced an 88 percent increase in cancer, the largest percentage increase of any country evaluated.”

This data doesn’t appear to come from the World Health Organization, or the NCI Surveillance, Epidemiology, and End Results Program—both globally trusted sources. Instead, it comes from a single paper from a pay-to-play journal. 

“You have to ask why the government would ignore this crown jewel of U.S. cancer surveillance, go to a pay-to-play publication to find a number that was clearly not verified nor validated and that is flat out wrong. Why do you think they would do this?” wondered a prominent biostatistician and cancer surveillance expert who spoke on condition of not being identified by name out of fear of retribution.

None of Paul’s sources for last week’s story were willing to speak on the record—a troubling sign of the times. 

“When you call when you contact biostatisticians, epidemiologists, public health experts, they’re usually proud to tell you what they think, and be quoted by name. Here I have people saying, “I can’t be quoted by name, my institution might not get its grant renewed. I might not get a grant.”

Other stories mentioned in this podcast include:

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 (00:04): The United States, by the way, has one of the world’s best systems for registries for tracking cancer. So, instead of getting the numbers from there, or instead of getting numbers from WHO, the more accepted sources, it seems the White House found the paper that said that America has the highest incidence of cancer in the world. “Oh my God. Oh my God.”

Also, you really have to understand what having a high incidence of cancer actually means. It means you’re diagnosing a lot of cancer. 

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 in publisher of The Cancer Letter.

Jacquelyn Cobb (00:58): 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 (01:08): So, let’s get going.

Jacquelyn Cobb (01:18): Can we curse in this podcast? Is that allowed?

Paul Goldberg (01:22): I think possibly, but not necessarily. If indicated. If appropriate.

Jacquelyn Cobb (01:28): If appropriate, which honestly, it might be

Paul Goldberg (01:29): If appropriate.

Jacquelyn Cobb (01:31): All right.

Paul Goldberg (01:32): And you know it when you see it.

Jacquelyn Cobb (01:34): Mm-hmm.

Paul Goldberg (01:36): Well, every week is more interesting than the previous week.

Jacquelyn Cobb (01:40): Indeed, indeed. Our roundup has really become a staple, [a] necessary story format, and it will continue for the foreseeable future, I think; right?

Paul Goldberg (01:49): I think so. I don’t know what else there is in the world other than what the White House is thinking, doing, announcing.

Jacquelyn Cobb (01:57): I know we have so many stories on the docket that are just not relevant right now. They’re relevant, but to cover anything besides what’s happening is just not doing justice to the world that oncologists are living in right now. It’s a wild time.

Paul Goldberg (02:15): I have not seen this much impact, good or bad, from any administration coming in.

Jacquelyn Cobb (02:30): Wow. And that’s something coming from you, Paul. You’ve been in this field for a long time. 

Paul Goldberg: I’m old.

Jacquelyn Cobb: No. You’ve been in the field for a long time. That’s what I was saying, <laugh>. 

Paul Goldberg (02:38): That’s a nice way of saying it, <laugh>.

Jacquelyn Cobb (02:42): All right. Well, to divert from that, I will take us briefly through last week’s headlines. Our cover story last week was, like we said, another roundup of cancer policy news, including a focus on national cancer organizations like ASCO, AACR, and the American Cancer Society Cancer Action Network—as well as Research!America—calling on Congress to restore stability to NIH amid budget caps and mass firings, which we’ve covered and talked about a lot on the podcast and in our previous issues. 

Our next story dove deeper into the issue of the mass firings at HHS, which included Renee Wegrzyn, [now former] director of ARPA-H, which was a new development last week. 

Our reporters, Claire and Yiqing, gathered a large collection of social media posts from people who have been fired, who are speaking out on social media.

Many of them received an email saying, ‘The agency finds you are not fit for continued employment because your ability, knowledge, and skills did not fit the agency’s current needs, and your performance has not been adequate to justify further employment at the agency. 

So, hearing responses to that—a lot of people were just weeks away from the end of their probationary employment period. There are a lot of really powerful statements in that story. 

We had another installment in our weekly column from former NCI director Kimryn Rathmell, discussing the importance of a global perspective in cancer research, as well as a guest editorial written by George Weiner about the necessity of political advocacy at this time. 

We also had an interview with Brian Rivers, director of the Cancer Health Equity Institute at More-house School of Medicine, one of four historically black medical schools in the country. The interview was conducted by Robert A. Winn, director of VCU Massey Cancer Center, and guest editor of The Cancer Letter during Black History Month. 

Finally, Paul, you wrote a piece about the data behind the paper quoted in President Trump’s Feb. 13 executive order, which establishes the president’s “Make America Healthy Again” commission. 

This is the story that we were hoping to get into a little bit this week, since we’ve covered the firings in the past. This is a story we can definitely dig our teeth into. There’s a lot to talk about. 

So, Paul, what exactly does this executive order say, and why was it raising eyebrows in the cancer epidemiology community?

Paul Goldberg (05:11): The executive order creates a presidential commission to “Make America Healthy Again,” and it cites data that nobody’s ever seen before. I don’t understand. I couldn’t understand that. Nobody else could understand it. And if you look at the data, the exact language—and by the way, the data are not cited by [the executive order.] The paper itself is not cited. 

So, we found the paper and we cite the paper, and the paper comes from three researchers in Wuhan, published in a journal that’s called the Journal of Hematology and Oncology.

And it’s not one of the major epidemiology journals, or not one of the major journals really in the world. And yet here it is. And this is important, why? It’s important because if America is unhealthy and it wants to be healthy again, how unhealthy is it? This is the baseline. Where are they getting the baseline? 

The United States, by the way, has one of the world’s best systems for registries for tracking cancer. So, instead of getting the numbers from there, or instead of getting numbers from WHO, the more accepted sources, it seems the White House found the paper that said that America has the highest incidence of cancer in the world. “Oh my God. Oh my God.”

Also, you really have to understand what having a high incidence of cancer actually means. It means you’re diagnosing a lot of cancer. So, you could take this to the kind of a logical extreme and see which country has the lowest incidences of cancer in the world, and you would find, according to the Wuhan group, that it might be Burundi. Burundi has very low incidence of cancer. I would not recommend anyone to move to Burundi in order to escape cancer. It just means they’re not tracking it.

Jacquelyn Cobb (07:32): And that’s what I think—I’m not sure if you got into this in your story, Paul, but the paper out of Wuhan was not intended to be used as this sort of baseline for an executive order to claim that the U.S. is not healthy. That was not their plan. That was not in their methodology. And a lot of what you went into in the story was that the methodology they used is not typical of our registry data collection.

Paul Goldberg (08:05): No, not at all. SEER, for example, does not collect data on non-melanoma skin cancers. And this paper does include that. Once you start collecting that, first of all, I don’t even know how you would collect it. They say they modeled it, the Wuhan group said they modeled, but I don’t know how you would collect it. It’s usually found in the dermatologist’s offices, not reported really much of anywhere. So, you can model it one way or another. 

Plus, the United States would have a very high incidence of non-melanoma skin cancers, because you have a lot of fair skinned people living in places like, you know, South Carolina.

Jacquelyn Cobb (08:58): San Diego.

Paul Goldberg (08:59): San Diego. Yeah. One can keep going on that list. So, you’re going to have a lot of non-melanomas and start putting them in… And I actually asked. I dropped an email to the corresponding authors, and I haven’t heard back yet. I’m not even sure they’re aware of how influential their paper has become and that it’s being quoted by the White House. I haven’t had the opportunity to talk with them.

Jacquelyn Cobb (09:33): Yeah.

Paul Goldberg (09:33): But it’s interesting how if you look at data that actually exists that compares more authoritative data—more accepted data, rather—that does the worldwide comparisons, the top four…

Oh, here’s what the paper actually says. Here’s what the executive order states. It states that the United States has the world’s highest age-standardized incidents of cancer. And the next one is half that much. And that’s Canada.

Well, the standard data would tell you that the United States is number four, again, depending on what you do with non-melanoma skin cancers, but let’s just include them. The United States is number four behind Australia, New Zealand, Denmark—and so we’re number four. And the fifth one—I’m not even sure it’s Canada—and it’s very, very close to the United States. 

There is no 50%, 100%, no, none of that. It’s just right behind there. So, I don’t know how they got the data. I don’t know what they did to the data. And I don’t think anybody does either. 

But the concern would be that this is the baseline. This is how we’re going to make America healthier than what it is. And thank you researchers in Wuhan. 

Most people just said, “What in the world is this?” That’s really what I got. The other part that was kind of sad, and the measure of the times, [is that] when you call when you contact biostatisticians, epidemiologists, public health experts, they’re usually proud to tell you what they think, and be quoted by name. Here I have people saying, “I can’t be quoted by name, my institution might not get its grant renewed. I might not get a grant.” 

It’s a very different time than what I’m used to. And these are people I know people I talk to all the time.

Jacquelyn Cobb (12:03): Yeah. Yeah. 

Paul Goldberg (12:04): So, yeah. And by the way, the other thing that we really should remember is the incidence of cancer. High incidence of cancer is often a good thing, because it means you have a system that finds cancers.

Jacquelyn Cobb (12:22): Exactly. That’s what I was going to say. Incidence is not really the metric that people should necessarily be concerned with; right?

Paul Goldberg (12:28): Well, you shouldn’t be concerned about it, but you’re measuring many things when you’re measuring incidence. You’re measuring how effective your system is in finding disease, but you’re also measuring over-diagnosis. You’re also measuring over-treatment, all of that. Well, you’re not measuring over-treatment. You’re measuring many things, such as over-diagnosis.

Over-diagnosis is possibly one of the characteristics of a well-functioning system. What you should do with that is find people who are doing less well than others and focus on them.

Jacquelyn Cobb (13:16): Yeah.

Paul Goldberg (13:16): And that would actually be a very good thing. Now, I guess maybe we should really talk for a moment also about what incidence means, also, in terms of diagnosis. So, you basically diagnose a bunch of people, and in the United States, its high incidence is driven by prostate cancer and breast cancer. You diagnose a bunch of people and then your survival rates go up, you know? Without anyone living any longer. So, it’s an interesting thing if this is the game they want to play. 

But on the other hand, if you are out after essentially establishing a baseline, “Oh my God, oh my god, high incidence of cancer,” then of course, mission accomplished.

Jacquelyn Cobb (14:10): Yeah, absolutely. We had a lot of really excellent quotes in this story. The fruit salad quote is really one of my favorites. I can get that up quick: “When you decide to include non-melanoma skin cancers in your analysis, you’re not just combining and comparing apples and oranges, you’re basically examining a fruit salad.”

So, I just had to say that if I was going bring up any quotes at all. But the one I intended to bring up originally was, “Any epidemiologist worth his or her salt will tell you that the appropriate outcome measure is cancer mortality and not incidence. It incorporates both finding and doing something about what you found—treatment.” 

And I think that’s really what a lot of the focus on incidence in this of alarm-bell-ringing executive order is really missing.

Paul Goldberg (14:55): And by the way, mortality has been declining. And this paper doesn’t, of course, state that. And the numbers are like nothing anybody’s ever seen. So, instead of just bringing it to real experts in the field, this was brought to the White House, and actually, I’m not even sure experts in the field would even think about it very much. They’re fun to talk to. So, I really enjoyed it. 

Jacquelyn Cobb (15:31): Yeah, yeah. Good for you. 

Paul Goldberg (15:33): I wish I could quote all of them by name, and under normal circumstances I would have.

Jacquelyn Cobb (15:37): I know. I know. This is a tricky question, but worth talking about. What do you think the Trump Administration gains by selectively citing data like this?

Paul Goldberg (15:52): I’m not privy to what the conversations have been. Somebody brought the executive order writer some cherry picked data and they said, “Oh, that’s exactly what we’re looking for, to show just how bad things are. Make America Healthy Again. There are ways to make America healthier than it is. They’re very difficult in oncology. 

People started just buzzing about this. But if you brought it out into the real world outside this field people would say, “Oh, yeah. Cancer incidence bad.”

Jacquelyn Cobb (16:46): Yep.

Paul Goldberg (16:46): You know, Uncle Eldon died of it.

Jacquelyn Cobb (16:49): Yep, exactly.

Paul Goldberg (16:49): Poor guy.

Jacquelyn Cobb (16:51): Exactly. 

I think we talked really well through the story. There’s a lot more details in the story itself with graphs and charts and everything like that—please feel free to go and dive into yourself. 

But is there anything else you want to talk about, Paul?

Paul Goldberg (17:04): Thank you. It’s another interesting week. It’s a great time to be a journalist.

Jacquelyn Cobb (17:12): Yep. Absolutely. Thanks so much for listening. 

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 (17:36): Until next time, stay informed, stay engaged, and thank you for listening.

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