Whitney Jones, MD is a colon cancer expert | colorectal cancer | genetic testing | lynch syndrome
- Bruce Morton
- Aug 15, 2022
- 19 min read
DESCRIPTION
Whitney Jones, MD specialized in advanced endoscopy in Louisville, Kentucky. However, his career path changed when research showed his state was 49th in the nation in colon cancer screening while leading the nation in the incidence of colorectal cancer. He shares his story with the @CancerInterviews podcast.
That inspired him to establish a Louisville-based non-profit in 2003, the Colon Cancer Prevention Project. It seeks to educate the public on the importance of colon cancer screening with an eye toward early detection. Dr. Jones is a vigorous advocate of legislation in Kentucky and around the nation seeking to make screening easily accessible and cost-free.
As a warrior fighting against cancers of all types, Dr. Jones urges everyone to engage in genetic testing, as it can heighten the possibility of early detection.
Additional Resources:
Support Group:
Colon Cancer Prevention Project https://www.kickingbutt.org
TRANSCRIPT
Bruce Morton: Greetings, and welcome to the @CancerInterviews podcast. I’m your host, Bruce Morton. Usually on Cancer Interviews, we bring on someone to share the details of their cancer journey; but on this segment, we are going to switch things up, and hear from a health care professional who is going to share information aimed at heightening your chance of avoiding a colon cancer journey. He is Dr. Whitney F. Jones of Louisville, Kentucky, founder of the Colon Cancer Prevention Project, also based in Louisville. Now in sports, some people say that defense wins championships. Well, Dr. Jones is going to tell us how offense beats cancer, and we are going to give him plenty of time to amplify that message. So, now, let’s get to it, and Dr. Jones, welcome to Cancer Interviews.
Whitney Jones: Thanks so much for having me. It’s a pleasure, and glad to be part of the team.
BM: Well, all of our interviews are a little bit different because everyone’s story is different; but we always like to start from the same place, and that is our wanting to get to know a little bit more about you, where you are from, your life’s work, and what you like to do with your leisure time, when you have leisure time.
WJ: Thank you. I am a native of Louisville, Kentucky, via Oklahoma, via Dallas, Texas, via Toronto, via Tokyo. I finally wound up back in Louisville as a professor at the University of Louisville. My focus area was, in fact, advanced endoscopy, where I took care of people with pancreatic disease, bile duct problems, as well as cancer. What I noticed was, in 2003, I saw three people in one week that had their bile ducts blocked by cancer that had spread from their colon and was obstructing their liver. So I got called in. I was never really a colorectal specialist outside of some specific procedures, and colon cancer was never part of my portfolio, if you will; but at that time I had just had my first child, and after that week of seeing three people who should have been screened, who had insurance, who were nice, smart folks, but they were probably going to die from this. I decided to do some research and it turned out that Kentucky was 49th in terms of our screening effectiveness, and we were first in incidence of colorectal cancer, and those things are really linked. Low screening leads to high cancer rates. So at that time, I decided to conquer the world and start a non-profit organization. I thought it would take one or two years to get the word out and change issues. Here we are in 2020, and in terms of my personal life, I am an outdoors person, I love to be out on the farm. I love tennis, I played collegiate tennis at the University of Oklahoma and I have got two great kids, ages 15 and 17, and a lovely partner who is in health care and we just have a great time, doing what our visions are, and the work that we have been able to get into in the state of Kentucky has really been rewarding, personally and professionally.
BM: It sounds like when the University of Louisville plays the University of Kentucky in basketball, you won’t be pulling for Kentucky.
WJ: In the old days, we had a lot of tension between UK and U of L because they would never play each other. UK wouldn’t play any of the other state schools, so when they finally met in the NCAAs back in 1980, you know, it sort of broke that, and now we have a really great tradition in Kentucky where it is really a great rivalry rather than an unspoken rivalry.
BM: Before we go any farther, we want to remind you if you like what you hear on this segment, we invite you to subscribe to our podcast, by clicking on the links below. There you will see a little bell icon. If you click on that, you will be notified anytime we post a new episode. Now, Dr. Jones, we have learned on Cancer Interviews, while screening opportunities for some types of cancers can be plentiful, for other types of cancers, not so much. It sounds like for colon cancer, it is not so easy to get a colon cancer screening.
WJ: I would say this. In say, 2010, colon cancer screening meant getting a colonoscopy. Now we have a lot of other options that are much easier for people who are asymptomatic and have normal risk, in other words, no family history, no personal history, of inflammatory bowel disease, and so really, colon cancer screening has never been easier than it is in 2020. It wasn’t until 2000 that Medicare covered colon cancer screening as an option. So this wasn’t known until the 1990s when an amazing MD named Sid Winawer, took a group of physicians and set up a national polyp study, where we proved that small polyps can turn into large polyps, large polyps, turn into early cancers and early cancers turn into late cancers. So there’s this great opportunity to intervene a precancerous state by identifying folks with these polyps. The issue is, when you have polyps, and you have early cancers in the colon or the rectum, a person has no symptoms whatsoever.
BM: If screenings are more plentiful, that’s one half of the equation. But the other half includes the people who need to get in for those screenings to be done. This is a rather large demographic between age 20 and age 54, but how urgent is it for them to get a screening?
WJ: The age for people with normal risk to get a screening starts at 50 and ends at about 75. The American Cancer Society came out with guidelines related to increases in early onset of colon cancer that were pretty dramatic, suggesting starting screening at age 45, and several societies related to cancer research wanting screening for African-Americans to start at age 45. So, your risk between 20 and 54, first of all, I would say if you are 45 and above, that’s a no-brainer, you should have already been screened. Your risk between 20 and 45 depends a lot upon your family history. Do you have a large history of large polyps, do you have a family history of colon cancer, particularly in first- or second-degree relatives. The second piece, and this is important for your viewers, screening really is about people who have no symptoms, but have some degree of risk. You may have high risk or normal risk and no symptoms. People with symptoms of colorectal cancer, change in bowel habits, rectal bleeding, unexplained abdominal pain, weight loss, that doesn’t need screening. Those people need a diagnostic professional to determine whether or not colon cancer needs to be excluded with a colon cancer examination.
BM: You mention this one thing I want to touch on, and that is family history. I suppose it varies from family to family, but how can one have a better handle on what their family history is so that can give them cogent guidance in terms of going forward with their own screening?
WJ: That’s a great question. I hate to admit it, but it is one of the big uglies in terms of colorectal cancer prevention. What used to be the most simple thing, say, 50 years ago, was the only thing we knew, was what ran in people’s families. So people who have a history of colorectal cancer, particularly under the age of 60, people whose first-degree relatives, those being your parents, brothers, sisters, and children in some cases, who have had large polyps or who have had cancer, really should be screened at age 40, or ten years earlier than the diagnosis of their first-degree relative. Likewise, second-degree relatives with multiple cases should be considered as well. How do you get this information? You talk with your family. November is Cancer Family History Month, so it’s a great time at Thanksgiving to talk about it, and so often, cancer has been an area of shame for families, they didn’t want to talk about it. Cancer used to be a death sentence. Why look for something that when you found it you were going to die from it? But that is not the new paradigm we live in. There is the need to find cancer early and save lives through early detection, but in some areas, there is the opportunity to prevent it. The single most important thing you can do is understand how cancer runs through your family, and it is not just colorectal cancers that may increase your colon cancer, but it may be uterine cancers, ovarian cancers have certain genetic syndromes that overlap, many of the breast cancer syndromes that overlap with colorectal. So, I think there are things to think about. If you have multiple cancers in your family, if you have cancers at early ages, or if you have rare cancers, those are all red flags you should bring up with your health care professional. There are many programs where you can go online, ask for your family history and they can spit out what your risks are, for screening examinations or even genetic testing.
BM: So how would you do that, in terms of finding that out remotely?
WJ: I could provide you with the links. There are several top tier companies that do genetic testing. Myriad Genetics and others like Ambry Genetics and Invitea Genetics all have online tools and it just walks you through your family. You could ask about your mother and did she have any cancer, how was it? How old was she when she had it, certain other issues, so it is like a tablet you might see in your physician’s office, it asks a question one at a time and moves you through the algo rhythm. I consult with Myriad Genetics for full disclosure, but I think any of the evidence-based panels that are out there do a good service, and people should know that genetic testing is available if cancer runs strongly in your family. Let’s take Lynch Syndrome for example. That’s the most common colorectal cancer genetic syndrome in America. The gene affects one out of 279 people, but we only identify one person out of ten with Lynch Syndrome before they have a cancer diagnosis, and I think that’s like landing the plane successfully one out of ten times. That’s not acceptable.
BM: You mentioned the genetic testing piece. Another element in terms of going on offense against cancer is a program of which you are a proponent called Lead Time Messaging. How does that work?
WJ: Let’s think about how we ended up on this interview. You didn’t call me and minutes later we started the interview, correct? We had to meet each other, understand where we were, plan this in advance, so that we had an on-time taping. That took Lead Time Messaging, and with regards to colorectal cancer, people need multiple messages before they perform a task. In marketing, it’s how important the message is as to how many times you have to hear it. Remember when there was a hurricane a few years ago in the Gulf of Mexico, the authorities said this is big and this is coming, and yet half the people did not evacuate, leading to some real tragedy, so the issue is, identifying risk needs to occur at the appropriate time and that is not when screenings should happen, but well in advance. So our foundation has proposed 35 instead of 45 that we begin to message more broadly about colorectal cancer and the importance of identifying the risk, getting your screening on time, and then if you normal risk, making your decision about the various choices that are available.
BM: That sounds rather high tech-driven. Is that accurate?
WJ: I think it’s super low tech-driven. I think the answer why it’s a ‘big ugly’ is none of our health care systems even know we collect the data, so they never present it back to the patient or the physician as an actionable piece. Physicians many times fill out family histories so that they can get through their electronic health visit because it’s required, but are they really applying what they entered into the record against a recommendation guideline? I think that is one of the missing connections. I do think there is a high-tech component that can help physicians do a better job, but I think there has to be the intersection between what physicians know and what patients know, so they can be self-empowered, and so what physicians need to understand in terms of what physicians need to understand in order to prevent disease. Going on offense against colon cancer means finding polyps and taking them out to prevent cancer, finding those early cancers that are asymptomatic that can be treated with surgery alone, or just removed through endoscopy, so it’s really more than that. It really goes back further into lifestyles, about not smoking, good diets, lots of fruits and vegetables, avoiding sedentary behavior, etc. Those are all contributors to colorectal cancer. That’s further upstream in terms of going on offense, but those are harder to change. Changing people’s behavior is not as difficult as changing their behavior to get a cancer screening.
BM: Legislatively, there are things you have done in the Commonwealth of Kentucky to advance the fight against cancer. First of all, and it might be a long list, could you mention the things at the top of the list, things that can be done, not only in Kentucky, but all around the country. What are some of the things you have managed to do legislatively?
JW: We got started on this in 2008 because the American Cancer Society used to grade states whether their insurance policies covered colon cancer screenings, that’s how far back we are going now, and Kentucky did not have any type of a mandate. So, when we initially started, we wanted insurance companies in 2008 to cover colon cancer screenings. We were inspired by some of the groups in New York State, as well as Colorado to actually create a program for the uninsured, but we were unfunded in 2008 because at the time there was a recession. We were later able to get funding to develop that program for the uninsured, so I think that was the greatest, getting people access to being covered as a no out-of-pocket service. Something we supported was Medicaid expansion in 2014, which opened up about 6,000 people in Kentucky to health care services. Then in about 2014 or 2015, we became aware that what was happening when people went in for a colonoscopy that was supposed to have no out-of-pocket expense, that if you went in for a screening and they found a polyp, the billing codes were being changed, so that instead of getting a free screening test, you now had a bill costing hundreds or thousands. I liken it to doing a safe driver’s course and your insurance rate goes up. Who wants that? That was fought on the national level in Washington for many years unsuccessfully and characterized as a loophole. Now, I like loopholes, I think things that help me advance things. I think of it as a bait and switch. No one likes a bait and switch. We were able to get that removed and at the same time, it applied an important conduit for the future of screening. As we do more and more non-invasive tests for normal individuals, so stool testing, stool DNA, commonly known as Cologuard, FIT testing, urine tests, blood tests, we are going to have a variety of tests, but to follow a non-invasive test with a colonoscopy, previously put the colonoscopy into a diagnostic category, not a screening category, so you might a $10 test that’s positive, but your colonoscopy was going to cost you $2,000, so that in no way closed the loophole. We got rid of that bait and switch legislation in Kentucky in 2016, and some other states have done the same, Illinois, Washington state and Maine have all enacted legislation now to do this, so this will be a battle on the state level, because at the federal level, we are not going to get too much done. The last thing is, we were able in 2019, to normalize coverage for genetic testing for preventative service. Since the Affordable Care Act went into place, tests for breast and ovarian cancer, people who had a family history were covered as a no out-of-pocket screening cost, but genetic testing for colorectal cancers, pancreatic cancers, prostates, was not. So, it was really a hassle to get this paid for when you identified folks. We eliminated that in 2019, so now if you view the NCCN, which is the National Colorectal Cancer Network, the guideline organization for genetics, you have no out-of-pocket cost in the state of Kentucky. We think the future is going to led by protein, DNA, artificial intelligence, other things. We cannot believe we are fighting the battle with just stool testing or colonoscopies. That’s like saying, “How are going to get to the moon? In a car, or a horse and buggy?”
BM: Our guest is Dr. Whitney F. Jones of Louisville, Kentucky. He is the founder of the Colon Cancer Prevention Project, also based in Louisville, and we are going to talk about the project in just a bit. Dr. Jones, I realize you are not familiar with all the legislative battles that are taking place in all 50 states, but I do know you get outside of the Commonwealth of Kentucky, so you see what is going on in other places. If there is any way you could put a single, fine point on this, what would you say is the biggest obstacle getting from Point A to Point B so that people can be screened for colon cancer, but other types of cancer in a cost-effective way that is not going to act as a deterrent?
WJ: The biggest part that has come out in the last ten years is the Affordable Care Act and the Medicaid expansions. You cannot underestimate the importance of having these screening tests be no out-of-pocket and no cost to people as a way of lowering barriers. Then you are primarily dealing with behavioral issues, making people aware that it’s important, again that it can prevent cancer as well as save lives. It’s not just a way to diagnose you, and say you have cancer now and you are not going to make it. Those are single most important things that cover the nation. What I think is critical at the state level is having a state-based organization that is dedicated toward lowering barriers within that state, including the colonoscopy loophole, the bait and switch, and advancing other causes. I think there is a real catalytic effect toward having a non-profit organization that is not a state-funded organization that can really work on a problem 24/7/365, raise their own money, not be tethered if you will by all the things that happen in large organizations that are federally funded.
BM: Now it sounds like a lot of the things you just mentioned are very much part and parcel of your organization, the Colon Cancer Prevention Project. If you would, Doctor, tell us more about the genesis of the project, what it is doing now and any other areas in which you hope to succeed.
WJ: In terms of the project, it’s really a catalytic organization that seeks to accelerate change and accelerate implementation of operations. There are a lot of great academicians that I work with across the state and the nation, who are doing an amazing job at studying things, but we really focus on this spate of organizations. It has to be important, so we are in colorectal cancer, that’s the second-leading cause of cancer death, Kentucky still leads the nation in cancer mortality from colorectal. Number two, there have to be guidelines already in place, and third, those guidelines are not being followed significantly, so we have really carved out a great space for ourselves. Everything we work on has data driven-based information behind it, but just isn’t getting operationalized. So, our organization, we went through three phases. The first phase was there is a lot of low-hanging fruit, so we did television shows, we did walks, we did pamphlets and brochures, handed out close to two million brochures out throughout Kentucky on colorectal cancer. We put stickers on the back of long haul trucks, one of the local trucking companies allowed us to put colon cancer messaging on the back. The second phase was called our legislative phase, when we really began to act with our state legislature, lotta great people there in the executive branch and the legislative branch. Those guys have been great and without their help and leadership at the government level, none of the things that we wanted to do or thought we could do, were there. And then, finally, I think we are now in the consolidation phase. We are really looking towards bringing in these ideas that we’ve put forward, and again, we are the most improved state in the nation in terms of colorectal cancer screening in the last 20 years, in large part due to the great partnerships we have developed across the state, but also being an innovator in terms of new technology, the DNA pieces, new types of testing, we’re looking at new ways to reach people in their early ages when they are at higher risk through digital marketing, getting to people on their cellphones where they live, rather than relying on the happenstance of a person who needs treatment having to see a doctor who happens to listen to him order a test. That’s too random for us, so, we are really reaching out to engage both patients as well as providers, and health care systems, in order to close the loop on that, so I think our real focus in the future is going to be how do we use the tools of the native digital people to communicate with them about their risks so that they can go on offense against cancer.
BM: You mentioned some of the new media you would like to have at your disposal. Are you as far along as you would like to be, or are there new frontiers to conquer?
WJ: There are new frontiers to conquer, but I am on the cusp of doing some pilot programs. One of the bigger issues that faces Kentucky is that our rate of early onset colon cancer, in other words, people under the age of 50, is the highest in the nation, and in our Appalachian regions, which is eastern Kentucky, our rates of colorectal cancer are even higher. So that’s why in Kentucky, I think the age when one should get screened is a decade earlier than the national guidelines. We believe our messaging has to start a decade earlier, not necessarily to get screened, but to understand your risk, and understand when you should be screened, as well as most people under 50 who have colon cancer, don’t have a family history, they don’t have a genetic history, it is a sporadic issue. We don’t understand just yet what causes this, but it is probably something in the environment, something we are eating, it might be something they were exposed to in early life, birth experiences, even. We don’t really understand that, but we know have to communicate to them that risk. If you have rectal bleeding, abdominal pain, unexplained changes in your bowel habits, unexplained anemia, weight loss that you can’t explain, from year 20 until you are 45, you need to get into a doctor, and demand, not just go and be fluffy, but demand an evaluation to rule out colon cancer, because it is absolutely affecting a whole new age group. If you are born in 1990 versus born around 1970 or 1950, your rates of colon cancer are 200 percent increased. That’s right, 200. And your rates of rectal cancer are 400 percent increased, as opposed to being born decades earlier. So, we have got to have a new strategy because we are facing a new disease.
BM: The Colon Cancer Prevention Project. There might be somebody, Whitney, right now, who would like to get hold of the Project, or more specifically, they might be wanting to get hold of you. Do you have a couple of web addresses you can share with us, so if they wanted to reach out, they could do so?
WJ: Absolutely. Our website is kickingbutt.org, but certainly if you google Colon Cancer Prevention Project, it will take you there. And if you reach our executive director, Amanda Smart, who has a Master’s in Public Health, and doing a great job, I might add, she can direct you to my e-mail and through us. So we would love to hear from anybody who is interested in reformulating the Project for the world, we have lots of tools that we ship around the world in terms of products, we have documentaries, we just released one on Public Broadcasting System called “Preventing A Killer,” that just came out this year that’s getting rave reviews, so I ask people to come to our website, look under education tab and you would like to contact us, we would absolutely like to work with you.
BM: One last thing we want to ask. Pretend that you have a private audience with somebody who thinks they might be a candidate for colon cancer. If there is any one, overarching thing, any point you would like to drive home with them, what would it be?
WJ: You do not have to die from colon cancer. You can prevent colon cancer through screening. And if you happen to have colon cancer, finding it at the earliest stage gives you the best chances of beating it. Our chemotherapy is better, our radiation therapy is better, our surgery is better. The way to manager colon cancer is through prevention. Don’t be afraid of it. Talk to your doctor. If colonoscopy is not your choice, there are lots of other options. But if you have symptoms, go to your physician now, demand an evaluation. If they say no, get another opinion.
BM: Wonderful. Our guest has been Dr. Whitney Jones of Louisville, Kentucky and the Louisville-based Colon Cancer Prevention Project. Whitney, thank you very much for your time, a lot of fantastic information here and now it’s up to the viewer to go and act on it. Again, thanks so much for being with us.
WJ: Bruce, thank you and your team for allowing me to share our work in Kentucky and be available to fight and improve our work.
BM: And that’s it for this segment of Cancer Interviews, and remember, T-E-A-M, Together Everyone Achieves More. Until next time, we’ll see you on down the road.
Additional Resources:
Support Group…
Colon Cancer Prevention Project
SHOW NOTES
TITLE: Whitney Jones, MD, Founder, Colon Cancer Prevention Project – Louisville, Kentucky, USA
Whitney Jones, MD specialized in advanced endoscopy in Louisville, Kentucky. However, his career path changed when research showed his state was 49th in the nation in colon cancer screening while leading the nation in the incidence of colorectal cancer.
That inspired him to establish a Louisville-based non-profit in 2003, the Colon Cancer Prevention Project. It seeks to educate the public on the importance of colon cancer screening with an eye toward early detection. Dr. Jones is a vigorous advocate of legislation in Kentucky and around the nation seeking to make screening easily accessible and cost-free.
As a warrior fighting against cancers of all types, Dr. Jones urges everyone to engage in genetic testing, as it can heighten the possibility of early detection.
Additional Resources:
Colon Cancer Prevention Project
Time Stamps:
04:49 A colonoscopy is not the only way to detect colon cancer.
06:26 Many factors determine at what age one should get screened for colon cancer.
10:37 There are lots of online resources one can consult when attempting to learn one’s family’s cancer history.
16:45 Colon cancer screening can be done at no cost.
26:40 If you have symptoms, demand a colon cancer screening.
28:52 Dr. Jones says thanks to timely screening, no one should die from colon cancer.
KEYWORDS (tags):
colon cancer
colorectal cancer
polyps
inflammatory bowel disease
lynch syndrome
colorectal cancer prevention
chemotherapy
whitney jones md
lead time message
genetic testing
radiation therapy
stool testing
rectal bleeding chemotherapy
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