Professor of Medicine and current adjunct professor in the School of Public Health and Information Services at University of Louisville. Dr. Jones founded the Colon Cancer Prevention Project and he continues to serve on its board. Dr. Jones also helped to form and currently chairs the Kentucky Colon Cancer Screening and Prevention Program Advisory Committee, which helps the uninsured and underinsured. He serves on the National Colorectal Cancer Roundtable's Family History and Early Onset Task Force, and he was the senior medical director for GRAIL. Dr. Jones has a medical degree from the University of Louisville School of Medicine. Welcome. Appreciate that. Let me check out all the slides, make sure we've got this stuff. All right, let's go backwards. Sorry, is there a backwards on here? Yep. Well, first of all, I wanted to, since we're here about stool-based testing, I thought we ought to say a little word for our buddy Jim Allison from California, who was like the godfather of stool-based testing. Everybody knows Jim had a rough fall in Italy, and so for those of you who know him, reach out. But he said, I'm glad the ASGE has finally recognized the value of fit in colorectal cancer screening. So T.R. and I sent him a picture last night. So a couple things. So first of all, what an honor to be here. Every time I say me, I really mean we, not only in my organization, but at the state level. So if I mess up and do a me, it's really a we. Here's my disclosures. I have a consulting company, and I've worked for Grail as well as Myriad, and in the past I'd consulted for Exact Sciences as well. So who gets to live in the slide that everybody brings up at the beginning of their talk about colon cancer? I do. Jim Hotz does, unfortunately. And again, I won't belabor this, but it is definitely a social determinant of health. It's not racial issues in many cases. Race drives social determinants of health sometimes, but I concur with the prior talks. This is an education, a social determinant issue. I want to talk a little bit about my project and what we've done and what we did, because I definitely started the project. I saw three people in a week, and I'm a therapeutic biliary endoscopist by training, EUS, trained in Canada as well. So I saw three people in a week with metastatic colorectal cancer. Every one of them was over 50. Every one of them had great insurance, and not a single one of them had been screened. And that's what led me to form this 501c3, and I thought I'd be done in a couple years. Just the folly of youth, I would say. So we started in 2003, so this is our 20th year anniversary. Our focus is on education policy as well as strategy, and I think not only, I think what Kentucky is, is a laboratory of a state-based level. Because the last mile of all the things you guys are talking about happen at a state-based level, and they happen in a health system level. They don't happen as often just generally and academically. So I think we're a, I think we're a sandbox, where we're working hard to try to sort things out. We're independent, which means we raise our own money for the most part, raised over five million dollars in the last 20 years and spent it. We're not raising, doing bank accounts, we're spending and investing this. And we've had multiple phases. We've gone all the way from pamphlets, are you at risk for colon cancer, we distributed over two million of them in our first years, to television shows, to documentaries on KET and PBS, and really we're focusing in moving towards digital, you know, screen, because we're, our focus as you'll hear is going to be about young colon cancer and really the continuum of cancer screening and a unified message rather than, than this. We have a self-governing board, four of ten of those folks have young colon cancer, under, under 45. It is tough, we've had seven executive directors over 20 years, so you have to have some continuity within your organization, and that's provided by our board. We have a couple of employees full-time and a host of volunteers, and we do walks, we do events, we do galas, walks, golf, that's our main fundraising, plus grants and thanks to Fight CRC who's helped support us in some of our work. And so that's sort of who we are. How we're doing this is we're really shifting, and again, our session is about follow-up of colon cancer stool-based testing, but again, I want to, I want to just say a word about FOLA. We're going to be facing lots of different tests that are coming up that are going to require that follow-up afterwards, and even though the ASG is probably gonna be the last person for blood-based colorectal, it's gonna, it's gonna happen whether we like it or not. It's gonna come, and MSEDs as well. So one of our board members is Dr., is Mr. Daryl Griffith, also known as Dr. Duncanstein. He has a, and he's in our most recent PSA, and I'm, that's going to be linked in the deck, and if you want to look at our, our options, we do pharmacy protocols in Kentucky. I think we're the first state to allow pharmacists to prescribe, and there's lots of great momentum behind that. We've done multiple KET documentaries. I would really recommend you take a look at them. You want to see what's going on in Appalachia, watch Preventing a Killer in Appalachia, and you'll, you'll hear it, because we contrasted Appalachia with urban Louisville in a really interesting piece with Christopher Tuex, who's a gun screening advocate, but had never been screened for colon cancer at 55. And again, you know, our focus has been on a lot of issues, so you'll, you'll see that as you go on. One of the things we've really focused on is core messages. You only have about 30 seconds or a minute to get a message out, and you can't get all six of these messages out, but you can get one or two of them out, and as long as they are the same messages amongst all the people who are messaging the folks, you're going to have a better outcome. So again, what would he talk about? If you're of average risk, 45. Family history, 40 or earlier. Screening options, take-at-home tests. Symptoms. I think we've really, this is a more of a screen the population for average risk, but you know, about 20% of people are at elevated risk, and this 45 strategy leaves them out of the picture. And I, and we'll talk a little bit about that in terms of our goals for increasing overall screening. And again, I guess the punchline, I was on my first slide, but I was messing with the thing. We've gone from 30% to 75% screening rates from 2000 to 2022 by the BRFSS scores, and that's been a 33% reduction in mortality, which is about 350 people, and over 27% incidence reduction, which is almost 650 people every year. So that's the punchline, but these messages are really important, and I think people get mixed messages. We have to be very clear about where we're going. So probably what we're known best for is our legislative work, and essentially I was inspired by going to New York City and doing a site visit, that they were actually not just talking about screening in 2005 and 6, but they were actually providing screening to people. So I was really inspired, and when it came back, I was determined to develop a program, but 2008 was the Great Recession, as you call, and probably the most important thing I did was hire a full-time lobbyist to work for our organization. And I want to go through some of the issues that we did. The first one was to cover colorectal cancer screening insurance. This is history for you guys, but I think it's important. Didn't even, insurance didn't even cover colorectal cancer screening in 2008. It was not a covered service at all. We created the Kentucky Colon Cancer Screening Program Advisory Committee, and that's probably at a state-based level the single greatest engine where you bring all of the people who sit at your annual roundtable together every month to work on problems, because you can't solve a problem once a year. It's impossible, in my opinion. But we had no funding for it, but we did create it, and I'm going to go over that committee in detail with you guys. Next thing we did was we tried to get some money for this, and we couldn't get any money. We parsed together some cold severance tax in Appalachia where their rates were the worst. We eventually got funding in 2012, half a million dollars a year to spend on colon cancer screening for the un- and underinsured. We had that money vetoed, and then we overrode his veto the next year in terms of funding, and this year we'll be going from a million every two years to a million every year. That's our ask this year. In 2012, we really worked hard with our Medicaid folks because we knew those were the servicers, and we added colorectal cancer screening to their top metrics they work on PI and QI, and that's great to have those partners at the table with you, and so that's really helped us in advance. Medicaid expansion was the mother of all policy, increased our screening rates 5% over two years. Our volume of our state program went for over six or seven hundred a year down to hundreds per year, one or two hundred per year. We're back up to 250 finally. In 2015, we closed the polyp loophole, which is you go in for a screening colonoscopy, and they find a polyp, and you come out with a diagnostics. We also basically did the follow-up of stool DNA after that. That being said, we still today have to fight health systems to code correctly, but now we have the Kentucky Hospital Association, the Kentucky Insurance Department, calling those people, not an individual doctor, saying, why is my patient not covered? So when they get a call from the Department of Insurance, that makes a difference, and we'll go through why that's important. More recently, we've been focusing a ton on what the future looks like, which is supporting genetic counselors, workforce development. We're going to need more of those, and then we passed actually I think the nation's first access and awareness to genetic testing bill, where if you meet NCCN guidelines in Kentucky, it is covered as a no out-of-pocket service, so not just BRCA, and not just Lynch, but also any of the things that you meet. And then finally, in 21, we had a protocol where we basically, through a regulatory process, allowed pharmacists to assess people for colorectal cancer risk, either offer stool-based testing, or when appropriate, refer for colonoscopy of symptomatic or high-risk, and those links are all going to be in my deck. So we've been busy. We've been busy. So probably the single biggest thing we did that was important was create this advisory committee. I must admit, that was genius, and I hadn't thought about it, and again, that's why if you're a state organization, be thinking about how you engage an expert in governmental affairs, because what we did was through statute, we created this organization that met every single year, every single month, excuse me, since 2008, even during the pandemic. Now we've slowed to every other month, but what we did essentially was put people who were in the loop on that committee and have them show up, not just as a sitter, but as a worker. So in yellow there, you'll see all the people who are in state government, okay, the DPH, Medicaid, Insurance Department, a Senate House appointee. Our House appointee had colon cancer at 40. Young woman, zero risk factors, not a smoker, colon cancer at 40, and probably three-month delay in her presentation, even though she's a high-functioning person. Then we have the Primary Care Association, the Kentucky Hospital Association, and then our partners at University of Louisville in Kentucky run the state-based cancer awareness program called the Kentucky Cancer Program, and they're out from Pikeville to Paducah, and we have screening rates in the eastern part of the state that are 50%, and we're over 80% in our rural areas in western Kentucky and Paducah, and so that's an amazing piece, an amazing disparity within a single state. And then we have some government appointees, and again, Darryl Griffiths is great, he did a PSA, and I'd recommend you guys all take a peek. But those are the usual players. Who else is in Kentucky working? Well, my organization is there. Kentucky Cancer Link does all our navigation. We navigate about 70% of fits to colonoscopy, and more recently, due to an incredibly kind grant from Exact Sciences over the last several years, have been implementing FIT as our stool-based choice, and we have over 90 percent completion with stool DNA testing. So thank you to the Exact Science folks. But we also have the Kentucky Cancer Foundation that helps seed money, the program, and adds more funds, African American Voices Against Cancer and the ACS, and Surgery on Sundays. And I didn't add that. It was last night, Eric, and it didn't show up. So we have a lot of people who are on the piece. This is our report over the last year, and again, we have a virtual format. We have 13 sites where we do colon cancer screening across Kentucky, four of these in Appalachia. We do have some constraints on resources there in terms of that wait to get that colonoscopy after positive stool test. But again, we have a lot of great things. We have a cancer detection rate of almost 2 percent, 2 percent on people who undergo screening through our program, two rectals and two colons in the last 12 months. And then I think, as you'll see, we have reporting every month. Where's my pointer here? Oops. Where's the – is it on the side or on the bottom? The pointer. Got it. Okay. Thank you. Yeah, so we're – you know, where we differ is we're not just doing asymptomatic, normal-risk individuals at 45. We do people who are high-risk. If you have rectal bleeding or symptoms, we engage you in our program. We not only do uninsured, but we do underinsured as well. If it's more than 5 percent of your annual income to get your surveillance colonoscopy for colon cancer or colon polyp, we will come in and support that. And we do provide transportation in our navigation in many cases. But as you can see, there's a whole bunch of reasons why people end up getting colonoscopies and reasons. Sorry about those 2 percent poor preps. You know, that's no good for anybody. And again, I think our final diagnoses sort of fit in here. We find a lot of hydrate-grade dysplasia, a lot of polyps, and then again, I think a 2 percent cancer rate in any screening program is extremely, you know, impactful. So that's our reporting. One of the things that makes it easy, and this is from my buddy Tom Tucker, who heads up the cancer registry at the University of Kentucky, is that what's happened in Kentucky has saved not only lives, about 1,000 a year in terms of not getting colon cancer at all or not dying from it, but also saves money. This was an analysis. If you can – because colon cancer is a relatively expensive way to die, actually. And he did an analysis looking at the people who didn't die from colon cancer because of incidence or stage shift. Turns out we're saving treatment costs of about $42 million annually in the state of Kentucky, and this was 2018 data. So when we go to our legislature to try to get money to help screen people, we're saving $42 million for somebody. It may not be Medicaid, it might not be Anthem, but it's someone, and that's general enough for the folks at the legislature, and hopefully we'll be successful this next year in our piece. So again, pretty significant. So this is what's happened in Kentucky. I didn't bring incidence and mortality because the mortality just follows the lines exactly, sort of a paucity of slides, but you can see we didn't have the highest colon cancer rates in the nation by a little bit. We had it by a ton. And now we're one-tenth of 1% away from number two, and we will pass those guys. We went from number one in mortality, now we're tied fourth and fifth with Oklahoma, actually. But you can see we've essentially erased the disparity rates in incidence between blacks and whites, but not too quick. I think we have a real issue here. I think this is blurring our Appalachian folks who are primarily white and our urban populations that are primarily black, and I think they cancel each other out. So I still think we have two problems, not no problems, with regards to racial disparities. Our big issue is in Appalachia. That's our biggest issue. Look at this rate. 20 years ago, Appalachians were like the rest of Kentuckians in terms of their colon cancer rates. Now there's a dramatic diversion away, and when we look at areas of the country, again, there's 17 states in Appalachia, all the way from Maine down to Georgia, I believe, and no one's cracked the code in Appalachia in any state that I'm aware of. So if you're looking for projects, look at that big swath, as well as the Mississippi Delta. And then here's another one, and this is really where my organization and our organization is going to focus on the next several years, is our young colon cancer issue, right? So this is young colon, on the bottom you'll see the United States' young colon cancer over 20 years, incidence rates, and on the top you'll see Kentucky's. So we are 20% higher, and we are diverging as well, so getting worse. So if we're going to address our overall colon cancer issue, we're going to have to begin to address our younger colon cancer issue. I think we all feel that in some way. You might have seen this before, but this was some back-of-the-math statistics. Becky Siegel would, like, hate me for this, but I took the rank of incidence and the rank of mortality, and that's the burden of colon cancer for a particular state, and that's on the left. And then on the right is the rank in young colon cancer incidence nationally. You'll see that of the top 10 states with the highest burdens of cancer, eight of those are in the top 10 for young colorectal cancer. You take the second 10 states with the highest burdens, seven of those 10 states have the highest rates of colorectal cancer in young people. And so I think eventually, you know, this doesn't necessarily fit into the stool-based discussion, but this is what we're going to be dealing with, and I think everybody saw the paper that came out, young cancers are increasing in every single cancer. So this is something we're going to have to deal with, and rather than being reactive, which is, unfortunately, I think where we are lots of times, we ought to be proactive and get ready for it, because when we talk about information, and that's going to focus on the rest of this, you know, our disparate populations are going to not need the same messaging that, you know, I don't want to say Kaiser Permanente or La Jolla, California or anything like that, but, you know, you might just take one message in the right population, and you're talking about a disparate message, disparate population, you're going to have to message people a dozen times. So starting at 45 to this messaging is, to me, a folly. Did anybody get an email this morning to attend this meeting and show up today, or did you get this email months ago? Why would screening be any different? If it's important, then how do we do it? So here's a little bit of the work that we do. You know, I think that when I see colorectal, I want to be like breast cancer. I want to be doing lifelong education. I want to really help people know how to prevent it if they can through diet, nutrition, exercise, smoking. I want them to understand their family history, not after they've had their resection, but to prevent their resection. And so I think that eventually what we're going to need to do, in my opinion, is we're going to need to follow our breast cancer folks and make colon cancer prevention and screening and understanding a lifelong educational piece, where we will come in at that moment when the endoscopy needs to be done or the stool test or the blood test with time, and we'll be ready for that. But that educational process, starting at 50, as we well know, you started at 50, nobody got their colon cancer screening until 55. I'm telling you, if we start at 45 messaging people, it's not going to happen until 50, unless we increase the frequency of messaging. These are some of our digital messages. We're switching to digital, so we're chasing people by geolocating them on their phone around their schools, healthcare centers, grocery stores, and we've been able to prove through a pilot in Appalachia, as well as Louisville, that we're able to have an increased open and click-through rate compared to healthcare means, like a hospital trying to get you through a digital message. And if you're going to reach young people, you can't reach them through traditional media anymore. You're going to have to reach them through their phones and digital media. I don't care. And most people, for all this work on health systems, how many 45-year-old men have primary care physicians versus women? I mean, to me, it's a folly, in a way, because they're not engaged. The brick-and-mortar system has gotten changed, in a way, in the last five years that I don't think will ever go back to the way it was. But again, we have these for urban messages, as well, but again, we're trying to make people young. We're trying to, you know, let them know early colon cancer is coming. This is probably my favorite. Don't sit on it. You know, educating young people about sporadic colorectal cancer symptoms ought to be on our radar. It should not be an after-effect. Just a note about that. This is a figure from a paper that I was fortunate enough to write with the late Dennis Annan and Paul Schroi, and this is really about messaging frequency, and again, back to this issue. We're wanting to get these populations who, you know, are not engaged or are not involved. Do you think they need more messaging or less messaging? Do they need the same messaging? Is it just that our message is wrong? Because I think we've focused on the message forever and not how far in advance you give the message and how many times you deliver the message. Those are the other two parts of the marketing triad. How great's your message, and then how often do you get the message, and then are you delivering it in advance of the action you want? So you really want to talk about family history with people. Talking to people about family history or life exposures at 50 is futile. It doesn't matter when you're 50 or 60, as I can attest. But it does matter when you're 20. It does matter when you're 30, and we're going to have to really, I believe, change our whole messaging format, not so much the message, but when we deliver it and how frequently we deliver it. That's going to be a key to increasing colorectal cancer screenings, because the big win is not those sporadics that we find or those families find. It will be that average-risk asymptomatic individuals will have heard the message a dozen times, not one time. And so when I look at this, and again, a little out of the stool-based space, but when we originally talked about this and wrote in the paper, we're really still talking about screening and finding those high-risk screens. But over the last couple of years, I really think we have to eventually develop a unified messaging strategy that really parallels our colleagues in breast cancer, which is to begin to educate people early in their life, and particularly about family history and sporadic colorectal cancer symptoms, but also about prevention and primary prevention, because I think, you know, that we're in a reactive mode in this organization where I think we should be proactive in terms of teaching people and educating people over time. And again, knowing the symptoms, knowing your family history, lifestyle. You don't send in the dieticians and the exercise guys until later, but they should be there. Every single slide we talk about talks about what we should be doing, and exercise matters, diet matters, smoking matters. Shouldn't that be part of our message, or is it only to screen? Is it only unidimensional? So I guess the way when I look at it, and here's my last slide, and my contact, if you need me, is, you know, we do a heck of a job with on-time screening. We're better than ever. And we're really great at surveillance once we get folks. We're not perfect in here. Our biggest opportunities are to get out in front and build a wall with education and messaging and awareness and information to find those 20 percent of people who ought to be screened earlier. There's – I haven't seen a single slide today about high risk, because we are focused on FOBT, which is a normal risk still. But eventually we have to get out there, and eventually, in my opinion, we have to find a way to talk about lifestyle awareness and the changes that we need. So I appreciate your time, happy to answer any questions. The state is the last mile for all of these incredible policies and these great studies that are doing. And I think ASGE, having governors in every single state, ought to really make sure this drops down to that level and engage the great leaders that you have in ASGE. So thank you.

Dr. Jones

Colon Cancer Prevention Project

stool-based testing

education

screening rates

prevention