Lauren welcomes Mary Charlton, director of the Iowa Cancer Registry, to the podcast to discuss the Iowa Cancer Registry’s “99 Counties Project.” This project aims to educate Iowans about the high cancer rates in the state, the types of cancer driving these rates, and risk factors that can be addressed through policy and community action.

The views and opinions expressed in this podcast are solely those of the student hosts, guests, and contributors, and do not necessarily reflect the views or opinions of the University of Iowa or the College of Public Health.

Lauren Lavin:

Hello, everybody, and welcome back to Plugged In to Public Health. Today we’re talking about something that affects so many of us unfortunately, and that is cancer. We’re joined today by Dr. Mary Charlton, a professor in the Department of Epidemiology at the University of Iowa College of Public Health, and she’s also the director of the Iowa Cancer Registry. She’s here to share insights from a project called Cancer in Iowa 99 Counties Project, a statewide initiative that dives deep into cancer trends, risk factors, and what communities can actually do about it. You’ll walk away from this episode with practical tips on how individuals and communities can take meaningful steps to advocate for better policy and use data to drive awareness and change, especially in rural and underserved areas.

I’m Lauren Lavin. If it’s your first time with us, welcome. We’re a student-run podcast that talks about major issues in public health and how they’re relevant to anyone both in and outside the field of public health. Now, let’s get plugged in to public health.

Plugged In to Public Health is produced and edited by the students of the University of Iowa College of Public Health. The views expressed in this podcast are solely those of the student hosts, guests, and contributors. They don’t not necessarily reflect the views or opinions of the University of Iowa or the College of Public Health.

Well, hello, Dr. Charlton. Thank you for being on our podcast today. Really appreciate you taking time to chat with me.

Mary Charlton:

Oh, thanks. Thanks for the invite.

Lauren Lavin:

Yeah. Today we’re going to be talking about the 99 Counties Project in Iowa. It’s about cancer. Could you just provide us with an overview of, one, who you are and how you’re related to this? But then also, the Cancer in Iowa 99 Counties Project and its objectives? That’s a big question.

Mary Charlton:

Sure. I’m a professor in the Department of Epidemiology at the University of Iowa College of Public Health. I’m also the director of our statewide Iowa Cancer Registry. We put out information these last few years about Iowa having very high cancer rates compared to the rest of the country. I think that it’s been great to get the conversation going. I think we added up, maybe in 2023, there were maybe 12, 13, 14 articles about cancer in Iowa that year. In the last 12 months, there’s probably been over 1500-

Lauren Lavin:

Oh my gosh.

Mary Charlton:

… media outlets covering this story in every corner of Iowa, national news, even international news. The Daily Mail even picked up stories about our high cancer rates.

Lauren Lavin:

What do you think was the impetus for that? For this media onslaught?

Mary Charlton:

Yeah, I think it’s just so unexpected that Iowa would have such high rates. I think it also got people thinking about what could be causing them. There’s been a lot of concern voiced from the general public about our high agricultural output, so that we have maybe some unique risk factors compared to the rest of the country. I think things like that got people really interested in trying to figure out why we would have such high rates.

Yeah, it got people talking, but it also scared people a little bit. I think a lot of times, people think, “Oh, there must be one thing causing all this cancer.” That’s simply not the case. Cancer is incredibly complicated. It’s a complex interplay between genetic, lifestyle, environmental risk factors. We all know people who smoked their whole lives and never got lung cancer, and people who never smoked and got lung cancer. It’s never just one thing. There’s also a big time lag in between your exposures and when you actually get diagnosed with cancer. There can be 10, 20, 30, 40 years in between. It’s just really complex, but I think it’s people’s nature to say, “Oh, there must be one thing that’s causing all this cancer.”

The 99 Counties Project came out of us really wanting to use our data at the registry to really level set and educate Iowans about the types of cancer that are driving the rates in the state and their areas. Where they do rank highly, what the risk factors for those types of cancers are. Are there screening options available? What they can do as an individual, as a community, and how they need to get loud with our elected official in Iowa to really start behaving like a state that has the second-highest cancer incidents rate and one of the fastest increasing rates of cancer. And start to implement policies and programs that make it easier to do the healthy things and harder to do the unhealthy things.

Lauren Lavin:

Yeah. I was just going to ask for some background. We, in Iowa, have the second-highest, is that what you said, cancer rate in the States? Who has the first-highest?

Mary Charlton:

Kentucky.

Lauren Lavin:

Okay. Are there particular types of cancer that are most prevalent in Iowa?

Mary Charlton:

Well, our types of cancer that are most common are the usual suspects of breast, prostate, lung, and colon, and melanoma being the fifth. But what’s different about these is our trends in those cancers are different. With the exception of colorectal cancer, which is predominantly decreasing in a manner similar to the other states. Our rates of breast cancer are increasing more quickly, so are our rates of prostate cancer also increasing more rapidly. Melanoma, we have one of the fastest rising rates in the country. And we have rates that are comparable to Arizona or Florida, or sunbelt states, which is unusual. Then lung cancer is one that’s decreasing across the country, but it’s decreasing much more slowly in Iowa. Then some places, flattening out. There’s even a paper that just came out recently that projects we will have the worst lung cancer incidents in the country by something like 2035 because we’re just not doing much to curb our smoking rate here. We also have radon as a big issue in Iowa.

Lauren Lavin:

Yeah, that is a big issue here. I know a lot of people with houses have to mitigate, that’s a part of the house buying process.

Mary Charlton:

Yeah.

Lauren Lavin:

Okay. Moving back to the project, what motivated the initiation of this project? And specifically, how did it differ from other initiatives around cancer data in Iowa?

Mary Charlton:

Sure. Well, one of the motivating factors was that Palo Alto County up in Northwest Iowa showed up in a news story as having the second-highest cancer rate of all counties in the entire US. When we saw that, we knew there was going to be a little bit of concern there and they were going to want to know what was going on. We proactively reached out to the people in Palo Alto County, and started to really dig into their data, and try and figure out why that happened and why they are so high. They did, in that five-year time period that was examined in that story, they did have the highest cancer instance rate in Iowa.

We started to dig into that, we met with them. They really wanted us to Zoom into a Chamber of Commerce meeting and talk to the people there, because there was a lot of concern and fear around that. That was about the time that we were writing a supplement to my current R01 grant to implement things like survivorship programs and other things like that. We thought about really using it as a platform to educate particularly rural Iowans, but everybody across Iowa, about what’s going on in their area. Again, level set and educate people so they’re not so scared and they feel like they have some resources, some understanding of what might be the best thing to do next. That was the inspiration for it. We were able to get a supplemental award from the National Cancer Institute to help fund this project, and also get some supplemental funds from the University of Iowa Holden Comprehensive Cancer Center community outreach and engagement team there to help us.

Between all that, I’m also the president of our state’s cancer coalition, which is called the Iowa Cancer Consortium. Dr. Whitney Zahnd over in health management and policy, and Dr. Sarah Nash in the Department of Epidemiology, also mentoring them on communicating … It’s a mentoring grant, the supplement. Mentoring them on educating rural Iowans about cancer risks. And also, just mentoring people in the community, healthcare providers out across Iowa about how to communicate some of this cancer data to the people that have concerns or have a passion to try to do something about it.

That was a long story, but that was the inspiration. We decided to do all 99. We didn’t want to just pick some. We thought, with some resources, and we were able to use some of those funds to purchase a Tableau license and work with a contractor who can train us on how to program that and use it, so that we could make these beautiful presentations and reports much more quickly than one at a time, which is what we were doing when we started with Palo Alto. We just thought it was a great way to connect with public health directors across the state, really show our value of the data at the Iowa Cancer Registry to everyone in the state. And also, we really want to make every cancer case count. Every person who had to go through cancer or may have lost their lives to cancer, everybody in our database is a person with a family who loved them and somebody who had to go through this awful experience. We want to make every one of those cases count and use our data to the fullest extent possible to improve the health of Iowans.

Lauren Lavin:

Yeah, make all those cases more than just a number.

Mary Charlton:

Yeah.

Lauren Lavin:

You are one busy lady. There’s another little nugget that you are a leader in. But when you talked about the meeting, you said you met with them in Palo Alto. Who are you talking about when you say them?

Mary Charlton:

Yeah. Well, each county presentation starts off with a small meeting, with just the public health director and their colleagues that they want to invite there, about how best to go about doing this. What’s the right format? Will it be all virtual? Do they want to have a meeting place where people are meeting there and we’re Zooming into it? Do they want one of us to come there in-person and have the rest of us online? It always has to be hybrid, just because I need a little help from my friends in fielding all the questions and presenting all the information. We do it every which way, we just defer to what the public health director thinks would be best for their community.

In the case of Palo Alto, that was our first one. They wanted us to Zoom into a standing meeting at the Chamber of Commerce in Emmetsburg, Iowa, a very small town up in Northwest Iowa. We didn’t really know what to expect, but obviously knew the Chamber of Commerce members would be there. They said they were opening it up to the public, too. When we did that first meeting, there were a lot of people online. I don’t know, I would guess 20, 30 people online maybe from there, and a lot of people from the university. We got help from people from the Cancer Center who were interested in helping fielding questions. We also invite people from occupational environmental health and some of their centers, like the EHSRC Center, to help us field a lot of the environmental questions that we get. Lots of people from the university online, too.

But we couldn’t see the people in the room, we were just presenting. It was a great discussion, tons of great questions from the audience, a lot of engagement. But it wasn’t until the next day when a local reporter did a story about it that we found out that there were over 150 people in the room in Emmetsburg, Iowa, who showed up to this meeting. I thought that was pretty incredible for a very small town. I think they had policemen, firemen, a high school biology class, healthcare providers, really interested citizens. It was a great discussion.

Lauren Lavin:

Great. I think that was some helpful context. What types of data are being collected for each county, and what are the sources for all this data? Because you need a lot of it if you’re doing all of this research and for every county, so where’s it coming from?

Mary Charlton:

That predominantly comes from our Iowa Cancer Registry, because we’re going through basically the top five cancers is what we’ve focused on. How they rank in those top five cancers, so in the case of Palo Alto County, they ranked very highly in a number of cancers and they were number one in lung cancer in the state of Iowa, so we go through those. We go through the risk factors for each case where we get those from the American Cancer Society or the National Cancer Institute on established risk factors for each one. We also go over things like their obesity, proportion of people, residents in their county that are obese, report no physical activity outside of their jobs. Eat no fruits or vegetables per day. What’s the other one? Smoking and binge-drinking are some risk factor information we share, and that comes from the Behavioral Risk Factor Surveillance System run by the CDC. We use that information that we can get on a county level.

We also rely on the census data, which is baked in to the Cancer Registry data, because that’s how we get rates. We use age-adjusted rates so that we can fairly compare counties and compare them to both the state of Iowa and the US. I’m trying to think if there’s any other sources of data we use, but I think those are the main ones.

Lauren Lavin:

It’s a good amalgamation from a few different sources, as all datasets tend to be.

Mary Charlton:

Yeah.

Lauren Lavin:

What are the most significant findings that have emerged from all of this data and the project so far?

Mary Charlton:

Yeah. This project is really all about dissemination, so I wouldn’t say there’s been a lot of data findings, other than it’s just really interesting to see the different cancers that come up. Usually, it’s always breast, lung, prostate, and colon, but the fifth spot is really interesting. That does vary by county.

It’s just been interesting to see the different … Sometimes there were 200 people online in Dickinson County, which is way up by Okoboji up there. Then there’s been other counties with 25, 30 place that join. There’s been the gamut of participation. A lot of interesting questions and we are compiling those into a frequently asked questions document that we post on our 99 Counties website. We’re also compiling a resource guide, resources across Iowa and in community-specific resources so that that’s available to people.

But in terms of other analyses that we’re doing, not necessarily as part of this project, but in partnering with Iowa Health and Human Services to really dig into some of the data about what’s going on. What’s been really interesting are the different geographic patterns for each of those cancers that we’ve talked about. Which again, I think lends more evidence to that there can’t just be one thing causing all the cancer, because all the patterns for each cancer are so different.

For example, when we talk about lung cancer, the southernmost few tiers of counties in Iowa tend to have the highest lung cancer rates in the state. Whereas melanoma, it tends to be the opposite. It’s the few tiers of northern counties in Iowa tend to have the highest rates. When we look at prostate cancer, it tends to be more common in the west, and social in northwest Iowa, those counties tend to have the highest prostate cancer rates in the state.

When we look at breast cancer, that tends to be the highest and have the fastest-growing rates in the urban areas, so Johnson County, Polk County, Story County, Lynn, just the more urban ones. We think that’s because one risk factor for breast cancer is waiting until you’re older to have kids, waiting past the age of 40. The longer you wait to have kids, essentially, the higher your risk for breast cancer is. Or not having kids at all. The more educated people tend to be located in urban areas, and the more educated you are, the longer you tend to wait to have children. That seems to be the factor that we’ve examined that explains the most of that, why we would see that so much more in our urban counties than we would in our rural counties, so that’s really interesting.

Lauren Lavin:

That is interesting. I did not know that about breast cancer and kids, I didn’t know about that correlation. What is the community response? When you go to these places and you meet with them, how do they respond to this? Is there anger? Is it just “we want to know what’s going on?” Are they surprised?

Mary Charlton:

There is a little bit of all of the things you just said. In Palo Alto County, one person, he had I believe lost his wife to cancer and many loved ones in the town. He said, “If you know that we have some of the highest rates of cancer in the state, why aren’t you sending somebody here to monitor all of our water in our homes and trying to figure out what’s going on?” Which is understandable. It’s understandable that people are scared and want to know what’s going on.

We do have to do some education about the scope of the Registry first. That we’re the messenger here, we’re reporting on the data and the patterns, and we want to be partners with you, and we want to connect you to resources. But we don’t collect information on risk factors. Our data collection starts at the time of cancer diagnosis, then we follow people through the end of their lives. We collect about, it’s a little over 200 variables on each person with cancer. We’re taking in information from all the different places they got care. You can imagine in rural Iowa, they might go one place and get diagnosed with colorectal cancer, and then need to go somewhere else, maybe a university for surgery. Then get chemotherapy somewhere closer to home. There’s often multiple places where people get care, and we have to take in all that information and consolidate that into one record per person with caner.

That’s really our role, is to do that. We don’t collect information prior to that cancer diagnosis. But we do partner with a lot of researchers, both at the university and across the country, to make our data available so that experts in those different exposures can really work to quantify the risks. One example would be the agricultural health study, which is run out of the National Cancer Institute. They enrolled about 50,000 pesticide applicators in Iowa back in the ’90s. They also enrolled a smaller number of pesticide applicators in North Carolina, but Iowa was the primary site.

They’ve been surveying them very frequently. They have blood samples, cheek samples, all kinds of things to really be able to quantify exposures. To ask them, “What types of pesticides have you been using?” Because people talk about pesticide exposures, but that’s thousands of different chemicals. There’s changeover time, what people use. It varies how much personal protective equipment they’re using when they apply those. They do very specific measurements and assessments of exposures. And then follow people over time, because it takes years to develop cancer, as we talked about. I think a lot of the people they enrolled were younger back in the ’90s, so they’re just getting to the age where they’re now developing cancer. That study is getting bigger and bigger, and more publications and more information is coming out all the time.

That’s one. We make our data available to them so they know who gets cancer and what types of cancer they get, and when, and their length of life after diagnosis, and all those different types of things. That’s how we contribute. We work with our partners at the UI Center for Health Effects in Environmental Contamination. They have a lot of water quality data, so they do some studies over there. Again, our partners at the EHSCR, Environmental Health Science Research Center. How about that? We work with them in doing studies. They’ve been really generous with their time and expertise, and created some fact sheets about different chemicals that people are concerned about and the health risks. They’ve done a lit review and made these very nice, succinct fact sheets that’s available on their website about nitrates, glyphosate, atrazine, those different types of things that people are concerned about.

We try to partner with all those entities to help address some of those questions. But again, we have to level set with people about what the Registry does and what it doesn’t do, what our scope is. Those are generally the angrier questions is about, “Why isn’t somebody doing something about this?” That’s frustrating because there isn’t necessarily an entity, one entity in the state, who is trying to really do some in-depth monitoring. But we are trying to use our data to the extent possible to figure out what seems to be driving this, or what is the geographic distribution of these cancers, and try and do as much as we can to help inform others who can dig in a little bit to specific exposures.

Lauren Lavin:

Yeah. You mentioned earlier about teaching them how to maybe advocate on their on behalf, because we know that individuals can be good drivers of change, especially at the local levels. How do you teach them to advocate? And how can policymakers leverage the findings from this project to help inform new policy?

Mary Charlton:

Yeah, that’s where we really rely on our partners at the Iowa Cancer Consortium. They oversee and coordinate what’s called the Iowa Cancer Plan that’s available online. Iowa is known for having the best in the country, very comprehensive. It contains all the evidence-based strategies and intervention type things, policies that can be implemented to reduce the burden of cancer, from prevention, to early detection, to treatment, survivorship, everything in between. People can look in there and see what policies that they can start advocating for because it’s what we tell people is you really have to get loud.

It’s really the only way something’s going to happen, otherwise it’s easy for the legislators to listen to the special interests or the concerns of certain companies. When we talk about things like raising the tobacco tax, that’s the number one most evidence-based impactful thing that can be done to decrease the cancer burden and we have not done that since 2007. That’s one that we really call out. We show a graph that shows what happened after the last time we raised the tobacco tax by at least $1 and you can see our smoking rates coming down, and then flattening out. We talk to people about “really talk to your elected officials about raising that tobacco tax.” That’s one a lot of people fight, a lot of companies fight, so we need people to get loud with their elected officials so they take that seriously. That’s just one example.

Lauren Lavin:

I do really think that individuals have a lot of power, especially at those state and local levels.

Mary Charlton:

Yeah.

Lauren Lavin:

Is there anything that I missed that you feel like you need to say about the 99 Counties Project?

Mary Charlton:

No. Just as a follow-up to what you just said, that’s the reason too, that we’re doing it county by county, is because we need the people in those counties to talk to their elected officials. There’s this grassroots effort across the state and that our policymakers start to hear the concern from so many people in Iowa, and that people just start to gain momentum in demanding that we do more to reduce the burden of cancer in Iowa. That was really the motivation that I should have mentioned earlier behind it, is that we need people across the state to really get loud about what they want to see happen with our state and local policies to address our high cancer rates.

Lauren Lavin:

Yeah. Well, it’s promising we have people like you spearheading these efforts because we know they’re going in the right direction then.

Mary Charlton:

Thank you.

Lauren Lavin:

We always end our podcast with this final “fun” in air quotes question. What are you currently readying or watching right now?

Mary Charlton:

I just finished listening to the book Methland, actually. That’s an oldie, but a goodie. I think it came out back in maybe 2007. It’s about meth and how Iowa came to be one of the meth capitals of the country.

Lauren Lavin:

I did not know this.

Mary Charlton:

It was so interesting. I loved it. It makes a case study out of Oelwein, Iowa. They really dig into what happened there. I love it because, just like public health and everything I love about public health, it really emphasizes the connections between what’s happening in the economy, and what’s happening in these small towns, and the culture, and the socioeconomic stressors. They talk about how meth became this big drug in Iowa because we’re known for our work ethic, and it was the drug that could make you work longer and harder. They talk about how it took hold here. How Lori Arnold, Tom Arnold’s sister, was one of the people that just changed the course of history in bringing meth to Iowa, which was so interesting to me. She ran a super meth lab out of the basement of her horse farm. She was a 10th-grade dropout and a multi-millionaire meth making person down in Ottumwa.

It was really educational, good history of what’s happened over the last several decades in Iowa. Highly recommend.

Lauren Lavin:

I like the point you made about the multi-factorial-ness. Like we talked about with cancer, or something like a drug outbreak, and just public health in general, there are so many factors that you just can’t pinpoint anything. We love simple answers and there isn’t one, and it can be really frustrating. But that can also be the beautiful part about it, is that we’re all so unique and it takes a lot of different inputs to get where we are.

Mary Charlton:

That’s exactly right, that’s exactly right.

Lauren Lavin:

Yeah. Well, thank you so much for sharing your expertise on this lovely Wednesday morning. I appreciate you taking time.

Mary Charlton:

Yeah, thanks for your interest in this topic. We appreciate it.

Lauren Lavin:

Yeah.