March is Colorectal Cancer Awareness Month, and we had the opportunity to feature two guests from the Colorectal Cancer Alliance, a nonprofit whose mission is to provide support to people affected by colorectal cancer, raise awareness of preventive measures and inspire efforts to fund critical research. Michael Sapienza, CEO of the Alliance, and Dr. Charles R. Rogers, an endowed associate professor of epidemiology and social sciences at the Medical College of Wisconsin and an advisor to the Alliance, discuss why they’re passionate about colorectal cancer awareness, the newest guidelines for screening, and efforts to make colorectal cancer care and outcomes more equitable.
Kim Thiboldeaux 00:09
Welcome to The Cancer Signal, a new podcast presented by GRAIL where we discuss the impact of early cancer detection, the science behind multi-cancer early detection and insight into how this approach has the potential to shift the cancer paradigm. I’m your host Kim Thiboldeaux.
March is Colorectal Cancer Awareness Month and today we are joined by two guests from the Colorectal Cancer Alliance, a nonprofit organization whose mission is to empower a nation of allies who work together to provide support for patients and families, caregivers and survivors, to raise awareness of preventive measures, and inspire efforts to fund critical research. Michael Sapienza is the Colorectal Cancer Alliance’s Chief Executive Officer, and Dr. Charles R. Rogers is an endowed associate professor of epidemiology and social sciences at the Medical College of Wisconsin, and a friend of, and advisor to, the Alliance. Welcome to the show, gentlemen.
Michael Sapienza 01:06
Dr. Rogers 01:07
Thank you so much.
Kim Thiboldeaux 01:09
Happy to have you. So today, we are going to discuss the role of screening for colorectal cancer, particularly colonoscopies and untangle some recent media coverage around the value of screening. But before we dive into that topic, we’d like to get to know both of you a little bit better. So Michael, let me start with you, please tell us a little bit about yourself and how you came to found the Colorectal Cancer Alliance.
Michael Sapienza 01:31
Absolutely, Kim, thank you. And thank you GRAIL for you know, having us both on today. As Dr. Rogers knows and Kim, you as well, unfortunately, my mom died of colon cancer in 2009. Actually, on Mother’s Day. I was a musician by training, had never probably even knew where my colon was right before this happened. And unfortunately, she did die of the disease, as I said in 2009. And our family was, you know, obviously shocked. She was 56 years old. And you know, why did this happen to such someone in the prime of their life she had never been screened. And you’ll probably hear me say that again. She had never been screened. And it obviously would have saved her life. But shortly after we started an organization in her memory called the Christopher Life Colon Cancer Foundation, that grew to be about the second largest colon cancer advocacy organization in the space. And in 2016, we merged with the then Colon Cancer Alliance, now the Colorectal Cancer Alliance. We are now though, the nation’s, actually the world’s largest advocacy organization, helping people with screening, screening awareness, actually access to screening, care, making sure that they have all the biomarker information, surgical information, anything, financial toxicity, etc. We have multiple communities. And then obviously, we fund life saving research and try to learn advanced clinical trials as best as we can.
Kim Thiboldeaux 02:55
Thanks, Michael. And I applaud you for taking that loss and turning it into your mission, your life’s work, to educate and reach and support so many other families who are being impacted by this disease. Dr. Rogers, please take a moment to tell us about yourself. And tell us about your work at the Medical College of Wisconsin.
Dr. Rogers 03:14
Yeah, so I think I’ll take a different spin than expected and build on a personal note, just like Michael shared. So 2009, it seems to have been a big year for many people. So in 2009, for me is when I found out that my Aunt Joanne was diagnosed, misdiagnosed, four or five times with stage four colorectal cancer at 52 years of age. For her, too, she had never been screened. At that time the screening age was 50, recommendation for Black people at that time was actually 45, but that’s a whole other conversation. But you know, she was able to thrive from this preventable, beatable, treatable disease for more than eight years, but it ultimately took her life. And so since then, I’ve been laser focused on trying to do something about the disparities that exist. So here at Medical College of Wisconsin, I wear several hats. As an endowed chair and associate professor, I take strides daily to basically dismantle systems of oppression to ensure equitable health for everybody. So over a decade I’ve conducted various research across the community, whether at the barber shop or churches, to basically eliminate disparities in both colorectal and cancer screening completion among African American men, as well as this early onset piece among younger people, younger than the previously recommended screening age of 50. As Inaugural Director of Community Outreach and Engagement for the Medical College of Wisconsin Cancer Center, we’re also working to eliminate barriers at every stage of cancer to improve the health of very diverse communities. Our approach to this is pretty simple. Our tagline is that we try to make the cancer center as accessible to the community as a public library.
Kim Thiboldeaux 04:48
Wow. Terrific. Dr. Rogers, thank you also for sharing that personal story. It really puts a lot behind the inspiration that’s led you to this work, and thank you also for the incredible work that you’re doing in health equity to bring equitable health care to all Americans. Dr. Rogers, for our listeners not necessarily familiar with colorectal cancer, Michael said when his mom was diagnosed, he didn’t even know where his colon was. Can you just take a quick minute to give us kind of the 101 on colorectal cancer?
Dr. Rogers 05:17
Sure, sure. And thanks again for the kind regards, Kim. So colorectal cancer is a disease in which cells in the colon or rectum, hence colorectal, grow out of control. So sometimes it’s called colon cancer for short, and in case you don’t know, the colon is the large intestine or the large bowel, while the rectum is the passageway that connects the colon to the anus. So sometimes these abnormal growths called polyps, form in the colon or rectum, and over time, some of the polyps may actually turn into cancer. So screening tests can find polyps so they can be removed before turning into cancer. And screening also helps find colorectal cancer at an earlier stage when treatment works best.
So your risk of developing CRC historically has increased as you get older, but honestly, everyone is at risk for CRC or colorectal cancer, as everyone has a colon. Although roughly about 90% of colorectal cancer is found in people over the age of 50, the rise among individuals younger than 50 is very important to talk about because, you know, they are 58% more likely to be diagnosed with a later stage of the disease, when it’s much harder to treat. Also, Kim, I’m sure you may be aware of this that right now, colorectal cancer is projected to be the leading cancer killer among those ages 20 to 49 by 2030.
Kim Thiboldeaux 06:28
Wow, it’s a startling, startling statistic really, but one that I think our listeners need to hear about and understand. So Dr. Rogers, let’s just talk for a minute about that sort of staging that you started to mention. So how does survival related outcomes, so right, how long we live after a particular cancer diagnosis, how does that survival related outcome differ for those whose colorectal cancer is diagnosed early stage 1, stage 2, versus somebody whose cancer is diagnosed later, stage 3, stage 4?
Dr. Rogers 06:57
Great question. So in brief, catch it early, live longer. And so specifically, when an individual is diagnosed early at a localized stage, they…you know their five year relative survival rate is about 91%, while those diagnosed at a distant or more advanced age have roughly a 14% chance of survival. So like with my aunt, back then, her chance of survival for stage 4 was less than 10%. So we have made some progress. Well, 14% is still very low compared to 91%. So for the latter piece in terms of advanced stages, that cancer has typically spread to distant, that’s why it’s a distant stage or advanced stage. So the cancer is typically spread to distant parts of the body, such as the lungs or liver or distant lymph nodes.
Kim Thiboldeaux 07:38
Okay, so, Michael, picking up on what Dr. Rogers is sharing with us, it seems that early detection and diagnosis is critical for this cancer, and certainly one of the tools, maybe the main tool right now for that is getting a colonoscopy. So can you explain, what is a colonoscopy? And what are the current guidelines for who should get a colonoscopy and how often?
Michael Sapienza 08:00
Sure. So, starting starting at age 45, anybody that is at average risk for colon cancer, meaning you haven’t had a first degree relative that has had it or you don’t have Crohn’s or colitis, or potentially other comorbidities that potentially will put you at an increased risk, should start getting screened at 45. If they find polyps in the colonoscopy, then you certainly have to go back more often. If you have a family history of colon cancer, or you know, other factors, you know, and you’re under 45, let’s say that my mom unfortunately had got colon cancer at 40, I should get it 10 years prior. So at age 30. If my mom had got it at 50, I should get it at 40. So 40 is really the starting point that anybody who has family history of colon cancer that should be getting it.
And then the only other thing I would just say is for young onset and this is really, really important because there has been and you’ll hear this in the facts and figures that are going to come out, a huge shift in younger people in terms of mortality. And the majority of that yes is between 45 and 49, but if you’re under 45 and you don’t have a family history, but you have blood in your stool, if you have you know cramping, weight loss, a change in bowel habits, you know any of those signs or symptoms and they persist for more than two or three weeks, you should absolutely see your primary care physician or a GI doc immediately. And you have to be your own advocate, because about 85% of patients under the age of 45 have to see three doctors before they get diagnosed. And that means they’re at a later stage. So yes, 45 is the main number, we really need to drive that home now that they just changed it. But if you have a family history, 40, and if you are younger than 45, you really need to be paying attention to the signs or symptoms.
Kim Thiboldeaux 09:53
And so Michael, the age used to be 50.
Michael Sapienza 09:55
Kim Thiboldeaux 09:56
Recently changed to 45. So I think that’s a really important message to get out there. And was that because we were seeing more and more cancers in people between 45 and 50? Is that why the guidelines changed?
Michael Sapienza 10:06
Yeah, Kim, I’ll just tell you, so our board chair and vice chair both lost their wives, 47 and 48 years old. And again, you’ll see in the facts and figures where the predominance of colon cancer deaths were in people that are in their 60s and 70s. It is actually moving lower for the first time, you know, and that is very, very scary. So we need to make sure that we are getting that message out that even before you’re 45 you need to start paying attention, so you don’t wait, and that you actually do it at age 45.
Kim Thiboldeaux 10:36
Excellent. And we got a whoo hoo from Dr. Rogers on that one for sure. Thanks, Dr. Rogers. Let me turn back to you Dr. Rogers. Last October, the New England Journal of Medicine published an article about colonoscopies that caused quite a stir. It also seemed to cause a lot of confusion around the value of colonoscopies. Could you briefly tell us what the study shared and what all the uproar has been about?
Dr. Rogers 11:04
So you’re definitely right, Kim, it seemed to cast a lot of doubt on just how beneficial a colonoscopy is in preventing colorectal cancer. So, you know, a little background, there’s these researchers from Norway, Poland and Sweden that reported that its participants who completed a colonoscopy were 18% less likely to develop colorectal cancer. The study also reported that the overall death rate among screened and unscreened people were the same at about 3%. Unfortunately, these study’s findings are in question as one, the reduction in deaths was too small to be considered statistically significant. Two, it’s important to consider that participants in the study were screened sometime between 2009 to 2014. So some got their colonoscopy as recently as eight years ago. The time from polyps that I talked about earlier to cancer to mortality is almost always greater than this, so a much longer follow up is needed. And three, more than two thirds of the research participants who were invited to get a colonoscopy, they never even showed up for a procedure. So could this have been the case because colonoscopies are not nearly as common in the European countries as they here are in the US where the study would perform again in the European countries. So of course, a colonoscopy does not work if an individual does not show up and get one.
Kim Thiboldeaux 12:17
Yeah, I should say so. Dr. Rogers, is it also important to look at, you know, you talked, we talked about sort of death mortality from these studies. But is it also important to look at moving from later stage earlier stage in some of these studies? Is it also important to do studies that show that these screening tests and things can help us diagnose at an earlier stage when the cancer can be cured?
Dr. Rogers 12:37
In brief, the answer is yes. And I’ll let Michael chime in with some, any additions he wants to add to that.
Kim Thiboldeaux 12:43
Excellent, excellent. Yeah, terrific. So Michael, let me just stick with the study for a minute. What was your reaction? Michael, how were the findings reported in media outlets and the headlines? I remember, as Dr. Rogers said, some pretty bold kind of headlines and generalizations. I imagine your phone was ringing a bit from media, from members, from board, from others who were saying, you know, talk to us about this study. So what do you think the impact was? And how did you kind of manage it as an organization and as a leader in this space?
Michael Sapienza 13:12
Yeah, it’s a really good question, Kim. And you think this was published in the New England Journal of Medicine, right, one of the most prestigious journals in science, right. And I would just say that was our initial reaction: how do we number one, put out immediately statements that are scientifically proven, etc. And I’ll tell you what we said. And then second is we’ve got to get in touch with the main media outlet that broke the story, and really, really hone in on what the actual title of that article is going to do. There’s already a huge stigma behind colonoscopies – people don’t want to do it, right. They don’t want to have something stuck where the sun don’t shine. And I’m telling you that that article, and that lead title, literally probably did the opposite of what we are all trying to do every single day. So long story short, what I would just say of the people that actually got the colonoscopy in this study, reduced their deaths by 50% and reduced incidents by over 30%. That is huge. So I mean, look, I will tell you this right now, if my mom had a colonoscopy at age 50, when she was supposed to, she would be alive. And that is the case for anybody else that was 50 and that had probably, you know, polyps that were growing, etc. That’s the whole point of having it. So yeah, we put out a blog post, we were pretty, we were very, very strong and saying this is absolutely ridiculous. Yes, there are things, there are barriers for people around colonoscopies, and there are other other screening options, right for those people, but it doesn’t mean that that title of that article was at all accurate.
Kim Thiboldeaux 14:49
Yeah, it’s hard. It’s you know, as you said, Michael, something they didn’t want to do anyway. So now they have the new story that says, you know, look, I guess I don’t have to do this, I’m going to skip it. And when you talk about your mom’s story, when Dr. Rogers talks about his Aunt Joanne’s story, and countless others who are out there, who if they had gotten the screening at the recommended age might be with us today. I think that’s important to really, to really reinforce. So Dr. Rogers, yeah, like…
Michael Sapienza 15:13
Kim, can I just say one other thing?
Kim Thiboldeaux 15:15
Michael Sapienza 15:15
So reinforcing that colon cancer is the second leading cause of cancer related deaths in this country. So there’s 50,000 people that will die of it. And it is the cancer, that if people got screened at 45 and above now, we would almost eradicate the cancer. So you know, there’s all these things, you have to worry about lung cancer, you have to worry about colon cancer, you have to worry about breast cancer, you have to worry about this, you know, and everybody, a lot of people get their mammograms close to 80-85%, depending on where you live. Well, colon cancer is the one that if you get a colonoscopy and they find polyps, they take it out, remove it, prevents it from happening. So yeah, so I’m a little bit passionate about it. As you can probably tell.
Kim Thiboldeaux 15:53
I can tell and I think it’s terrific. And I think it’s important to reinforce that. So that idea that it is screenable, it is preventable, it is curable. It is, I know so many people ask me Kim, when are we going to cure cancer and I say, we are curing a lot of cancers. Go get your colonoscopy, get those polyps out, you know, we are curing a lot of cancer. So let’s follow these guidelines. You know, and get out there and get the recommended screenings. And you know, I know it’s, you know, maybe particularly challenging for people who are, who are younger, and, you know, feel that’s something for me for later and you know, later in life, and when I’m my mom or dad’s age, you know, but 45, it’s no joke, guys, that’s, that’s the new age. And it’s important that folks do know that and recognize that. And I appreciate both of you really emphasizing the importance of these screenings. Michael, last year, and maybe in an effort to reach that younger demographic, you launched a fun kind of play on words, a fun campaign called Lead from Behind, the Lead from Behind campaign to raise awareness of screening with an emphasis on this new screening age 45. So tell us about the campaign who was involved with it. How has it been received? What’s the impact?
Michael Sapienza 17:02
Sure, a survivor came to us Brooks Bell, a young survivor, she was 37 when she was diagnosed and said, you know, I want to make colon cancer famous. And, you know, I’ve been saying that also for the last decade since my mom died. And so, you know, we really kind of went on this crusade in a way to say, how do we do that? And, you know, when was the last time that you had heard of a celebrity actually having colon cancer, you know, when Chadwick Boseman passed away, we did like the whole world of us, number one tweet of all time. But make a long story short, we launched Lead from Behind in September of 2022, with Ryan Reynolds and Rob McElhenney, from Always Sunny in Philadelphia, doing their colonoscopies live, well actually not live but videotaped. And there was like a competition and it was funny, and they had about 20 million video views, we had about 3.5 billion media impressions. We had, I think, close to almost 1,000 media outlets across the country doing it. And then there was a study done right after between Axios and ZocDoc, that said that it was a 34% increase in the 30 days after of colonoscopy appointments compared to the entire 100 days before and the same period the year before. So, you know, a lot of people will say, oh, awareness campaigns are just awareness. Well, this one, no, it actually created action. And so, you know, it was…this will happen right before the Nordic trial study came out. And so I was thankful that we had launched before, but there was almost part of me that wished we had done it right after and we will continue to do that. Our next campaign hopefully will be coming out in March and we’ve focused on you know, people of color and actually involving you know, celebrities etc.
Kim Thiboldeaux 18:44
Terrific, terrific. Dr. Rogers, what were your thoughts? What were your thoughts about the campaign when you heard about this Lead from Behind campaign, a good approach?
Dr. Rogers 18:53
Oh, yeah, I thought it was fantastic. I’d just be honored that I, like I know Brooks, I know, Michael. So I’m just thankful that I have friends that are really doing what’s needed to think outside the box to reach people.
Kim Thiboldeaux 19:01
Great. And I love hearing, Michael that, during this, during March which is Colorectal Cancer Awareness Month that you’re going to be doing more to get the word out and with a particular emphasis on health equity and reaching communities of color, reaching underserved and marginalized communities. So I love hearing that little bit of a teaser for what’s to come in March. So I just, as we wrap up, gentlemen, Michael, I just like for like you to take a moment to tell our listeners, what kind of resources does the CCA offer for those facing colorectal cancer needing to know more? Where can folks find you? And what can they expect to get and learn and learn from you on your website? Or on your phone line?
Michael Sapienza 19:42
Yeah, sure. So ccalliance.org is where you can find us. Obviously, we’re all over social media, and we have the website, etc. We have a helpline and navigation line. But we, you know, whether you are newly diagnosed, whether you’re in the fight, you know, we really help patients in various ways. So number one, you know, if you need any help with just navigating your journey, so is that biomarker information, meaning what is your actually tumor look like, and what drug can actually help, you know, making sure that you’re either cured or you can live longer, etc, any surgical information, any side effect information, we have a buddy program, we have financial assistance, we have two online communities. And we actually just launched the first of its kind digital platform for patients that brings all of our services into one place called Blue HQ. It’s bluehq.org. And it will be transformational because as medicine gets more and more what we call precise, it’s kind of like the difference between World War II where you had carpet bombers, right that didn’t really, weren’t able to like target things. And now you have precision bombs that can actually go in and literally get into a bunker. And that’s what we’re trying to do with precision medicine with a tumor – actually get a therapy that is able to get right into that tumor and kill it for that specific type. And so patients don’t need to hear about every single type of treatment. They need to hear about the treatment that is right for them at the right time. And so we’re doing a lot of work in that area, and then we’re obviously also, you know, with Kim and others working on clinical trial access, clinical trial recruitment, and figuring out, how do we do that in the community center? How do we do it better in the rural and excuse me, rural community setting, and urban setting. And then obviously, just funding more research. From 2009, or 2008, to 2018, there was literally zero increase in national funding for colorectal cancer. It went from 351 million to 353 million. So we need to get more young investigators in the field. We need to throw as many darts at pilot studies to get more people into the field. And then all of this is wrapped in a you know, I’d love if we have a minute for Dr. Rogers to talk about this. But all of it is wrapped in the health equity and access piece, right. So you know, African Americans or people of color are 20% more likely to get this disease in this country, and 35% more likely to die. And it is unacceptable. It should not matter what zip code you live in, what you look like etc, every single one of those people should be getting the same access and care of the rest of us. And I just want to applaud Dr. Rogers. He’s done a ton of studies, specifically in you know, for men getting screened for colorectal cancer, and what are those barriers? So yeah, we’re doing a lot.
Kim Thiboldeaux 22:33
Let’s, let’s do that. Michael, let’s just quickly Dr. Rogers to weigh in on you know, the importance of this work in health equity. Dr. Rogers education, awareness, access, affordability, all of those components.
Dr. Rogers 22:46
Yeah. So Thanks, Michael, for the kind regards. Yeah, so like when I first started this work, why I was interested in Blackness specifically is for one, like Michael with his mom. I’d never heard about colorectal cancer either. In the Black community we only talk about breast cancer for Black women and prostate cancer for Black men. So when I heard about CRC, I was like, oh, you know, what is that? And so when I actually got into the literature, that’s when I saw for one that the screening age it had been recommended to be lowered to 45 for Black people as far back as 2008 by the American College of Gastroenterology. I’d also learned for me as a Black man, I had a 52% higher chance of dying from colon cancer than Michael. And I think I had like a 27% higher chance of being diagnosed with it. And I saw nobody doing anything about it. So I, you know, I really just started getting the literature try to create more awareness, you know, relating to myself and if I don’t know about this, I imagine other guys don’t. And I started really thinking about like, what keeps people, specifically men, from getting screened and I thought about the jokes that guys make then confusing the you know the the finger exam with the scope exam and, and all these other things and so you know I’ve done a lot in the masculinity space, I’ve developed scales, etc. But the biggest thing is that you know, to overcome this preventable, beatable, and treatable disease, we have to be creative. So we saw with the Lead from Behind campaign, we see it through my work where I try to meet men where they are. So at the Superbowl Sunday, I know that’s coming up…in the past, you will see me at a bar before the game talking about colorectal cancer or you might see me at a house party. Or you might see me at a barber shop, or you might see me at a church, or you might even see me other double A…I don’t know the acronym, but some basketball game for men. We have to be creative and reach people where they are in ways that may not be as common as normal. But what we see now that it’s not a normal disease, it’s not at all, it’s not impacting just old white men. It’s impacting everybody.
Kim Thiboldeaux 24:36
That’s right. Well, I applaud both of you for your passion, your hard work, your dedication to making advances in this space and raising awareness, raising education and saving lives. So thank you both for joining us today. We’re incredibly grateful. This is The Cancer Signal presented by GRAIL. I’m Kim Thiboldeaux. Tune in next time to learn more about the impact of early cancer detection.