COVID-19 has caused people to delay important cancer screenings and medical appointments. Coupled with the rising rates of colon cancer among younger adults, it’s clear the healthcare industry must change its approach to screenings, education, and prevention.
Cindy Borassi, Interim President of the Colon Cancer Foundation, explains how the organization aims to increase colon cancer screenings in underserved communities. Plus, she discusses the importance of educational outreach among younger populations. And Kate interviews Cassie Fraser on her experience being diagnosed with colon cancer in her forties, and the importance of having a strong support network.
Interim President, Colon Cancer Foundation
Cindy Borassi is the President of the Colon Cancer Foundation, a not-for-profit “Dedicated To A World Without Colorectal Cancer™.” Ms. Borassi has spent nearly 30 years developing and leading new programs and business initiatives in the not-for-profit space, both in the U.S. and abroad.
Prior to joining the Foundation, Cindy served as Development Director for the International Executive Service Corps (IESC). As Development Director, Cindy was responsible for IESC's corporate, private and governmental development efforts. While there, she used private-public partnerships to leverage existing and new programs around the globe.
As Interim President of the Colon Cancer Foundation (CCF), Cindy leads CCF’s national communications and outreach efforts focused on building awareness of colorectal cancer and the importance of early screening and detection of the nation’s second-leading cancer killer of women and men. She has been actively involved in the organization and growth of the Foundation’s annual Early Age Onset Colorectal Cancer Summit (EAOCRC) since its inception in 2015.
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We're trying to encourage changing the way we talk about colon cancer and when we start talking about colon cancer and encouraging those conversations to start at a much younger age. You have to stay positive, you have to stay strong, and you just have to realize you're going to beat this. And so I'm going to beat this too. And everybody else can too.
Terry Wilcox (27s):
On today's episode, changing our approach to colon cancer, education, screening, and prevention. What that means for patients is up next. Welcome to the Patients Rising podcast. I'm your host, Terry Wilcox, Executive Director of Patients Rising, a hundred thousand members, strong organization of patients with chronic illness. I'm joined by my fully vaccinated cohost, Dr. Bob Goldberg, Co-founder of the Center for Medicine in the Public Interest. Now, how are you feeling after round two of the vaccine, Dr. Bob?
Dr. Bob Goldberg (60s):
Well, I'm, I'm a little bit disappointed because I was hoping for a Cat in the Hat or dinosaur band-aid. They just gave me the regular grownup one.
Terry Wilcox (1m 9s):
I would want a Cat in the Hat band-aid
Dr. Bob Goldberg (1m 11s):
Yeah, but I feel great. And, you know, I feel like myself, which as you know, Terry, that's a pretty scary thought in and of itself. Getting the shot process was efficient. And I think, as I said before, I said the idea that we have these vaccines so quickly, even with all the backups and dislocations is very moving and it, my Dad got his shot and I think up to 70 million Americans have at least gotten one dose. And you know, we're going to have the Johnson and Johnson one dose vaccine shipped out this week. Merck is going to be adding production. Hopefully, more Americans will be immunized and we can wrestle this pandemic to the ground. And we can look, we've always talked about vaccines and Covid cause we have to right?
Dr. Bob Goldberg (1m 54s):
But it always goes back to our primary concern on the show is access to effective health care for people with chronic diseases. And that's the conversation we will continue to have and will continue to focus on as we look at what's going on in Washington DC and the nation's Capitol.
Terry Wilcox (2m 13s):
Well that's right. So we're here each week to give listeners an inside look at health policy decisions in our nation's Capitol. Cancer patients are a large population within the chronic disease community and this population has been hit hard by the pandemic.
Dr. Bob Goldberg (2m 28s):
Yes, and when COVID started to spread many patients delayed their screenings, delayed their follow-up visits. You know, the predictions are that just a delay of a month will lead to not just later stage diagnosis, but increased death. And it's disheartening. It's an effect of the pandemic, probably unnecessary. Some of it was mitigated by the use of telehealth and digital health. But you know, at a time when we really are, you know, ramping up our ability to treat cancer, using some of the same kinds of understanding of their immune systems that inform the COVID vaccine, it's crazy to think that next year we could see cancer mortality rates go up for the first time in 25 years.
Terry Wilcox (3m 12s):
I know that's very disheartening to think about for sure. Now, did you know that it's Colon Cancer Awareness month this month?
Dr. Bob Goldberg (3m 19s):
Yes. I am aware.
Terry Wilcox (3m 21s):
We are going to kick it off as the first show of the month highlighting colon cancer. As you know, it's impacted my family deeply. My sister-in-law, Cassie, is currently battling the disease and she will be sharing her story with us later on in today's episode in her interview with Kate, which I'm very grateful that she decided to do it. I wasn't sure if she would or not. I asked her and she said, yes.
Dr. Bob Goldberg (3m 42s):
Well, I'm glad she did. And of course, you know, you and I, and everyone wish her only the best. And thank her deeply on behalf of the Patients Rising community. I also know that you spoke to the interim President of the Colon Cancer Foundation and talked about something that I've been focusing on in my research. And that is the alarming rise in rates of colon cancer among younger adults in a form of colon cancer that seems to spread more rapidly than other forms when you're older,
Terry Wilcox (4m 14s):
Right. Cindy Borassie leads the Colon Cancer Foundation and she talked about the effort to educate younger populations on proactive screenings and checkups. And I would say that my sister-in-law isn't as young as the youngest group that they're talking about here, but she wasn't yet 50. She was in the between 45 and 50 range, which is, they do say now apparently, or they are going to come out with the guidance, that 45 is the screening age, but it was 50 for a long time. So Cassie is really lucky that she caught it. My interview with Cindy will be up shortly, but first this week's healthcare news headlines
Robert Johnson (4m 54s):
In your health news, a new effort underway to help older Americans get their COVID-19 vaccines. Seniors have been allowed to get their shots almost from the beginning, but many don't have computers to schedule their appointments while others thought they'd be contacted for an opportunity to get a shot. That hasn't been the case until now. The Biden administration saying this week, it will partner with health insurance companies to contact Medicare recipients for help getting appointments and transportation to vaccine sites. Guidelines for vaccinated people are on hold at the CDC. They were set to be released this week. The recommendations when final are expected to offer direction on activities that are safe among people who've had their shots.
Robert Johnson (5m 35s):
The draft of that was not released. Reportedly was going to tell people to continue wearing masks in public and follow social distancing guidelines. Travel also was expected to be addressed in the report. There's no word on when it will be released. It's also anyone's guess when the Senate will finish its debate on the latest coronavirus relief bill. One thing's for sure, the debate will stretch into the weekend. The $1.9 trillion aid package provides a new round of checks for millions of struggling Americans, extends unemployment benefits through August, and sends funds to States, tribes and territories. It does not include a $15 minimum wage hike.
Robert Johnson (6m 14s):
Doctors treating patients with COVID infections for more than a year now, are reporting new symptoms caused by the virus, rashes, blood clots strokes, and even foot lesions called Covid toes have been connected to the Corona virus. Long-term symptoms. Now blamed on the virus, include difficulty thinking and focusing, heart palpitations, hair loss, and mood swings. Finally, thermal scanners used to check temperatures of people at schools, airports, and other public places may not be as reliable as we hoped. A new study of the scanners warns they can be dangerously ineffective raising the risk that infected people are being clear to mingle with those who don't have the virus. On hearing the news from the media, the FDA issued a public alert warning that the devices could lead to inaccurate measurements.
Robert Johnson (6m 59s):
That's your health news update for this week. I'm Robert Johnson.
Terry Wilcox (7m 8s):
I wanted to kick off our news discussion today with some very good updates from the Massachusetts State legislature. Two bills were just introduced in the House and the Senate in Massachusetts that would ban the use of quality adjusted life years, a discriminatory healthcare metric we talk about a lot on this show called the Quali, and this would ban their use by the Massachusetts Health and the Health Policy Commission. Last week's episode with Bill Smith was all focused on the Quali. We broke down what it is and how it can prevent rare disease patients from accessing coverage for their treatments. So if these bills are passed, it would be a huge victory for the rare disease community in Massachusetts.
Robert Johnson (7m 45s):
Do you know who was behind me? You know, obviously the Pioneer Institute was a major force in this, was this a bipartisan effort? Cause it seems like in Oklahoma it was. And I'm wondering if
Terry Wilcox (7m 56s):
It was, and I generally think that this is a bipartisan effort. I think, let me put it this way, I don't think it's hard to make it a bipartisan effort. I think when it comes down to this, if we really get into a discussion of qualities at the federal and even at the state levels, people are going to have a really hard time. I mean, you have Elizabeth Warren wrote a letter to HHS last year to Seema Verma and Alex Azar about the use of qualities. She does not agree with them. According to her, her own letter, she's a Democrat, there's many Republicans we know do not support qualities. And likewise there's others besides Senator Warren. I just happened to know about that. So, you know, it didn't really come up at the Becerra hearings. There were many other things that were discussed.
Terry Wilcox (8m 39s):
Everything from 340 B to obviously COVID and anything you can think of really, how are you going to make health care? There was one question. I forget what Senator asked it. It was literally like, how are you going to make the healthcare system better? I'm like, that's not a big brush.
Dr. Bob Goldberg (8m 59s):
No, not at all, not at all. How are you going to heal the planet?
Terry Wilcox (9m 3s):
Yeah. It's like, how are you going to heal the world?
Dr. Bob Goldberg (9m 6s):
Yeah, how are you going to bring peace between the Romulans and the Klingons, you know.
Terry Wilcox (9m 11s):
I mean, I liked the point, you know, you could tell where different senators were coming from. I think Senator Maggie Hassan asked about opioids, obviously that's been a big issue in New Hampshire. So you, if you looked at the Senator and looked at their state, you know, sometimes you could get some clarity on why they were asking the question they were asking. Bill Cassidy, I know asked about the 340 B program. He's a doctor, a lot of doctor mergers and things have them not supporting 340 B for a variety of reasons. So yeah, it was an interesting hearing.
Dr. Bob Goldberg (9m 45s):
So at least here with Biccera, there is a substantive discussion, and I think you're right, I think he will get confirmed, and I think that that issue may emerge again. But for the people with chronic diseases, I think the focus on 340 B's important reimbursement, for telehealth and improving the quality of care both through digital care and through, you know, regular care, is important. These are key things for our audience and didn't come up a heck of a lot in the hearing, but they will be front and center in the next few months in the next couple of years.
Terry Wilcox (10m 18s):
A couple of other things this week that we can talk a little bit about are the PBMs are really circling the wagons on Biden, thanking him for pausing the Trump rule till at least 2023 on rebate pass through and Part D, which is you and I both know, we both wholeheartedly agree on anything to clamp down on, on those rebates and pass it through. I mean the obvious largest fix for Part D would be to have an out-of-pocket cap because that 5% can go on forever.
Dr. Bob Goldberg (10m 48s):
Exactly. It is that addiction to rebates and the next thing, and there's a contributor at Forbes who I would love to get on the show, Robert Pearl, who made another point, which is, he said, you know, the deal now is these high out-of-pocket deductible plans are now 53% of all the offerings. And bundled into that is the fact that you can reach your maximum just with prescription drug benefits alone. Sometimes there isn't a separate camp for the drug benefit. Most like with Medicare Part D. Meanwhile, the rebates still exist. And as a result, the insurance companies doubled their profits during the pandemic.
Dr. Bob Goldberg (11m 29s):
And it wasn't so much because people didn't show up. That was part of it. But also that shift to the high deductible plans, which basically passes on the premium increases to the consumer and hides the rebate spread, which is also pocketed. It's really quite remarkable.
Terry Wilcox (11m 47s):
Yeah. I mean, it is definitely a need of an overhaul. Benefit design, I'm going to say it on every episode at some in our banter, I'm always going to talk about benefit design and how, if we do not address benefit design, we're just going to keep getting more of the same. It's the key, it's the key, it's the key to the whole thing. And the insurance companies don't want to hear that, but it really is. And you know, just the nature of pharmaceuticals and what their capabilities are and what they're doing when you talk about gene therapies. And I do understand their sort of alarm at what they're going to cost, but that doesn't mean you can just bury your head in the sand and make more corrupt benefit design plans that bankrupt patients.
Terry Wilcox (12m 28s):
You have to figure it out and work with pharma and work with obviously our leadership, our government to figure it out. That's just what has to happen.
Dr. Bob Goldberg (12m 36s):
I think that's exactly right, Terry, you know, we've had Mark Fender on the show a couple of times, match the coverage to the treatment, pay for the things that allow people to get healthy and stay healthy. It isn't the total answer, but I think telehealth will increase continuity of care. And those two things together, I think it can make a fundamental difference in the lives of people with chronic conditions. Along those lines, if I could try to segue now that Johnson and Johnson came out with a single dose vaccine and we see that Merck is going to use its manufacturing facilities to increase the capacity to distribute it. You know, a lot of people in our audience are sort of hesitating.
Dr. Bob Goldberg (13m 18s):
Should I choose between Moderna, Pfizer, you know, the Johnson and Johnson, whatever's available - get it.
Terry Wilcox (13m 25s):
That's what I say. I mean, I I'm on a list with my Step-mom's assisted living facility. I don't have a date yet, but I do think that I'll be getting, I'll be fully vaccinated at some point in the next couple of months, which I'm very excited about. So yes, I mean, whatever version you can get, I think you should get, we are Provax at Patients Rising. If you can take a Vax now, you and I both know, we know people who cannot take vaccines and we're not talking about them. We're talking about the general public. So another thing I want to hit on before segueing into my interview this week, which was fantastic, is talking a little bit about our friend at the FDA, Janet Woodcock.
Terry Wilcox (14m 7s):
We are pro Janet in many ways. She's done an enormous amount for the rare disease community, obviously the cancer community, but there is some wagons circling. I mean, we know the opioid advocacy groups have a beef with how the FDA and specifically Janet handled parts of the opioid crisis and others are saying there's too many cancer drugs approved. They aren't being selective enough. What's your take on this Bob?
Dr. Bob Goldberg (14m 32s):
Well, I think the opioid people sort of open the gate and you and I understand their concerns about the horrible spread of opioid addiction in the United States in particular and its effect on male adults in our country. But if Janet were on the show, and maybe we'll get her on the show, I think she would say, look, it is true. You know, there are these problems. That's why we introduce these abuse deterrent formulations. And this is why we encourage insurance companies and physicians to prescribe them. At the same time, there are people out there, and there are people, you know, in the Patients Rising community who the pain is immobilizing. It can cripple.
Dr. Bob Goldberg (15m 12s):
And without the access to opioids, it's difficult. Some people are made to feel like common criminals. And I think the FDA has an unenviable job to deal with it, but that's separate. And apart from the fact that there are people that just don't like Janet, because they think that there are too many drugs, and the only reason they think there are too many drugs is because they think in their mind, well, these drugs aren't very effective. And to them, I say, look, the pace of approval has gone up. The rate of approvals remained the same. It's still hard to get a drug through the FDA. If you don't think a drug works, don't use it. Don't prescribe it.
Terry Wilcox (15m 45s):
And you know, people don't understand that the role of the FDA isn't to set drug prices, it's to determine, is it safe? Is it helping patients? Is it affective?
Dr. Bob Goldberg (15m 55s):
Does it work in those specific populations?
Terry Wilcox (15m 56s):
Does it work in the populations that are being applied for? That's it.
Dr. Bob Goldberg (16m 1s):
And the science has changed.
Terry Wilcox (16m 3s):
And you know, safety is a key factor. I mean, obviously if your drug doesn't work, nobody's going to take it. I don't know how many times I have to say that to people. I mean, do you think you're just going to run around taking drugs that people think work,
Dr. Bob Goldberg (16m 17s):
The critics make this absurd notion that most cancer drugs don't increase survival by much. But if that's the case, then why have we seen until COVID a steady, substantial decline in mortality rates, especially for the most severe cancers. Mortality rates for pancreatic cancer have been cut in half, lung cancer, melanoma, I mean these are now curable diseases. So don't give me this garbage that Janet is just pumping out marginally effective drugs when in fact there are highly effective medicines across the board and we need more of them and more combinations to do so. So I think it feeds us up in that you and I talked about as well, Terry and that is that the environment about discussing science has been polluted by politics in particularly by the medias involving itself, insinuating itself into every conversation and turning it into a political gotcha kind of event.
Terry Wilcox (17m 15s):
Well, absolutely. I mean, if you, if you just even take and I'm just going to hit on this briefly, if you just kind of follow the CDC website and what they're putting out, you know, it's fairly benign. You can like CDC, it says fully vaccinated people no longer have to follow the quarantine rules, but then you have Dr. Fauci, you know, out there saying we shouldn't go to the theater until maybe the fall. We shouldn't do indoor dining until more people are vaccinated.
Dr. Bob Goldberg (17m 40s):
Yeah. I mean, these have consequences. Like we said, at the beginning of the show, that every time the media comes out with some garbage about, and by the way, folks, yes, every virus has a variant. That's what viruses do. When they sign up to become a virus, the first thing on the application form is can you mutate? And the answer is yes. And if you're yes, then you're accepted into the ecosystem. There are different strains of the flu. There'll be different strains of COVID. Whether or not we need to vaccinate yearly is still up for debate, but that's how viruses do it. It's not another rationale not to go to the doctor. And that's really the bottom line is that, you know, cancer screenings and colonoscopies were delayed.
Dr. Bob Goldberg (18m 20s):
And there was a study in the UK that said the delay of two million colonoscopies, which isn't a lot in a country, will probably lead to 4,500 avoidable deaths,
Terry Wilcox (18m 30s):
Right. Because they'll get diagnosed at much later stages.
Dr. Bob Goldberg (18m 32s):
That's right. You know, once you get colon cancer, if it's diagnosed later stage, obviously with all cancers, it's harder to treat, more expensive, more painful. And the irony is that there are so many new modalities that can be used to treat colon cancer early to really, you know, have the disease go into remission.
Terry Wilcox (18m 50s):
Well, and there's also many new modalities of testing and screening, which Cindy and I talk about this in our interview. So without further ado here is my interview with Cindy Borassi, Interim President of the Colon Cancer Foundation. As we kick off our first episode for March, it is Colon Cancer Awareness Month. Everyone has one and everyone needs to take care of it. And there are many things we can do to help ours stay healthy. Today, I'm joined by Cindy Borassi Interim President at the Colon Cancer Foundation. Welcome Cindy.
Cindy Borassi (19m 22s):
Thanks for having me, Terry.
Terry Wilcox (19m 24s):
It's great to have you here. This is a fantastic topic. It's one that's kind of hit home personally for me over the past year. My sister-in-law had colon cancer under 50, out of nowhere, stage four, you know, so it's definitely been in my orbit. So I was really excited to do this show for raising awareness.
Cindy Borassi (19m 42s):
Sorry to hear that. She okay?
Terry Wilcox (19m 44s):
You know, she's made it through treatment, so we're just taking it right now, she's positive and it's all good.
Cindy Borassi (19m 51s):
Yeah. There's so much that we've come so far with stage four disease.
Terry Wilcox (19m 56s):
I would love to kick it off by just allowing you to share a little bit with our audience about the mission of the Colon Cancer Foundation of which, you know, you're the Interim President.
Cindy Borassi (20m 6s):
Sure. Well, we are actually an 18 year old organization based outside of New York City. And our primary focus is on preventing colon cancer from ever happening to wonderful people like your sister-in-law. And we do that through very broad multi-channel omni-channel education and awareness events across the country. We also do that through research. We support young investigators who are trying to understand why this is affecting ever increasing numbers of young adults under the age of 50.
Cindy Borassi (20m 46s):
And we're actually now turning our attention to understanding why the numbers are going up in the ages of 50 to 54 year-olds. And then we also spend a great deal of our time advocating for equal access to care and focusing on quality of life, which includes fertility preservation and the most effective precision medicine available out there that will lead to the most optimal outcomes for all patients and their caregivers independent of where they may be treated anywhere in this country.
Terry Wilcox (21m 16s):
Well that definitely fits right in with the Patients Rising mission, especially around access and affordability, because we always say, you know, things don't work if you can't access them. And that's one of the most important factors in our healthcare system today is, you know, it's not just about insurance. It's not just about having a plastic card in your wallet, but it is about the design of the benefit, the access public health initiatives. There's all sorts of players that need to work together now with part of your mission being obviously early detection and most effective screening methods. So what can you tell our audience about that as we kick off colon cancer awareness month, what is it you most want people to know about those things?
Cindy Borassi (21m 59s):
That is actually one of the most important things that we would actually want to tell your audience. And it's part of our very large mission for 2021. As a matter of fact, our goal for 2021 is to raise as much awareness as possible of the fact that it's critical that we identify those at most risk and get them screened and follow up on those that actually have had a positive test by using all of the screening tests that are actually available to us right now, and make sure that the general public and clinicians act at the earliest possible stage on any symptom or sign that they may have going on. And we, actually, we've set a goal for ourselves of increasing screening for underserved and underinsured communities across the country by at least 10,000.
Cindy Borassi (22m 48s):
But I want to stress that early detection and stage of diagnosis is actually one of the most important predictors of a patient's survival. In fact, five-year survival rate is 90% for those who are diagnosed early with localized disease. And we could make considerable progress against colorectal cancer by just raising provider awareness of and increasing access to guideline recommended screening. That includes multiple options for screening, other than colonoscopy, with tests that are already out there that can be used in the comfort of someone's home.
Terry Wilcox (23m 25s):
I remember hearing several years ago, and this is from various types of funders and programs that were happening, where they would go, and these were actually breast cancer screenings and they would go, and they would do the breast cancer screening in low socioeconomic communities or urban communities that just sort of had, you know, healthcare deserts in a way. They would just do the screening, get their grant for doing the screening, but there was no follow through to make sure that there was care for those that had a positive test or experience. And so I was interested to hear you say, following up on those with positive tests, because it doesn't do much good to have the test and get a positive screening of some kind and then not have the healthcare follow-through.
Cindy Borassi (24m 8s):
Right. In fact, in the programs that we're designing this year, we're working with healthcare systems in and around New York City in some of the most underserved communities in the country. And it's not going to be enough just to deliver 10,000 free stool tests until I'm blue in the face, but if I can't figure out how to actually get them back, it doesn't do me any good. And we've discovered multiple times over in many studies that patient navigation embedded in the community is critical to getting the general public to actually return those tests. So that's a big factor in the programs that we're designing to roll out this year.
Cindy Borassi (24m 51s):
And you're right, we have the same studies in colon cancer. In fact, that's one of the things that leads to, for example, higher mortality, greatly higher mortality rates for those in the black community, up to 40% more than non-Hispanic whites because of poor follow-up to positive test results in late stage diagnosis.
Terry Wilcox (25m 14s):
Yeah. I can only imagine, that that's a huge challenge. And it's one that, you know, I know many of our friends in patient advocacy across disease States struggle with. It's like, how do you do that? And finding those mechanisms. And I even say that there's a lot of sharing to be had from different patient communities around how to do that, even for colon cancer or breast cancer, whatever the case may be. I just think it's so important. And that's really part of our public health initiatives that we need to be looking at I think overall. Speaking of public health, we have spent the year locked down with a pandemic, so I would not be doing my job if I didn't say or ask you, is there anything that we've learned or that you've learned in the colon cancer world?
Cindy Borassi (25m 58s):
We've learned a lot as many people or most people I would say, and I can't speak for everyone, but I think most people in the public health sphere have learned an incredible amount from COVID-19 and yes, it has actually had a devastating impact on cancer screening overall, but specifically on colon cancer screening, there was a 90% drop in colonoscopies and biopsies just from March and April. And that's an estimated 18,800 missed or delayed diagnosis of colon and rectal cancer through early June, just through June. That's 1.7 million missed colonoscopies.
Cindy Borassi (26m 41s):
And we're just talking colonoscopies. We have heard reports that in just in the month of April, there were 80,000 missed fit tests from one diagnostic company. So those are just giving you an idea of some of the numbers we're up against. And unfortunately, we're already projecting out that this is going to result in at least 4,500 excess deaths from colorectal cancer over the next decade. And again, that's just, we're projecting out from the numbers that we're using from June. And so there's an incredible backlog of cases that we need to catch up on. And then of course, as you mentioned, all the people that are now, it's their time.
Cindy Borassi (27m 24s):
It's their first time that they're ready for their first screening. We're ready for them. That's one of the messages that I have today, but I want to circle back to some of the other things that we've learned. I think one of the things that COVID 19 has shown a light on already existing disadvantages and they've been exacerbated in underserved populations. So for example, those without access to broadband have difficulty accessing tele-health services, or if they don't have the digital literacy skills to utilize the video visits, it makes tele-health a non-factor for them. One of the other lessons is positive that COVID-19 has really shown us, anyway, that we can in the public health sector come together in very rapid time.
Cindy Borassi (28m 9s):
I mean, in a matter of months to very creatively address a global public health issue, which colorectal cancer is, it affects millions. It's the third cancer killer across the globe. And it's high time we did the same for cancer patients. So I'm not just speaking for colorectal cancer patients, it's cancer patients in general, the millions of patients that are dealing with this as a chronic disease. So two examples and ways that we could address this on a very broad scale and very creatively by coming together is if we addressed earlier screening for those with a family history or hereditary syndrome. We could save thousands of lives immediately. And if we were doing universal tumor testing for those that are already diagnosed, we would also find thousands of individuals and we could prevent colon cancer from ever affecting them.
Cindy Borassi (28m 57s):
So those are just two of the things that we've learned.
Terry Wilcox (28m 59s):
Well from a public health perspective, just touching on what you just said, what if people don't know their family history?
Cindy Borassi (29m 5s):
I think this is where, you know, we encourage getting very creative where we're trying to be honestly very disruptive in the space this year. So be on the lookout for our campaigns, but we're trying to encourage changing the way we talk about colon cancer. And when we start talking about colon cancer and encouraging those conversations to start at a much younger age. We didn't get into the statistics, but what's happening right now is over the last few decades, the rates of colon cancer have steadily declined until very recently, we're actually starting to see them increase in the 50 to 54 year old age group.
Cindy Borassi (29m 47s):
And we don't know why. And there's also a very rapid increase in cases for those under the age of 50. And the most rapidly rising rates are in the age group 20 to 29.
Terry Wilcox (30m 1s):
And we don't have a real handle on why that is. I mean, my sister-in-law was like I said, she wasn't 50 yet, I think she was 46, and had no symptoms, stage four.
Cindy Borassi (30m 12s):
Right. We don't know yet. And that's actually one of the things that we spend a lot of our time and resources on is trying to understand what we call early age onset colorectal cancer, and we actually host a global summit on that topic every year. It'll be a virtual this year, of course, but we bring in researchers from all over the globe who are trying to figure this out. There are several theories. I mean, you've got the usual suspects. So obesity, sedentary lifestyle, diet which causes thousands of cases every year. Those are the usual suspects, but we're looking at environmental factors that may have caused a huge shift in the population that may be affecting mothers in their young children, even when they're still in the womb.
Cindy Borassi (30m 59s):
So there's a lot of potential suspects that we're looking at that researchers are really digging into right now, all over the globe.
Terry Wilcox (31m 6s):
Well, I'll tell you something, you, you trying to reach young people, that's just, this is a side, but it's actually kind of funny. I have twin seven year-olds and they are crazy about this television show right now called Henry Danger, which I don't know. It doesn't matter if you've ever heard of it. It's a Nickelodeon CBS show, but one of the running jokes in the show has been that this one guy keeps rescheduling his colonoscopy. And so my kids who can't even say colonoscopy, certainly don't even know what it is, they come in the room and it's like, they're like laughing. They just think it's so funny that Schwoz keeps rescheduling his colonoscopy, which is just hilarious. But they can't. They're like the colon cospocy, the colon poscy.
Terry Wilcox (31m 47s):
And I was like, oh my gosh, a colonoscopy. And I was like, you know, I had to explain to them everything about a colonoscopy, why we get a colonoscopy, when we get a colonoscopy, So, you know, Henry Danger is doing its part. Then on another note, you just mentioned a program, your virtual summit.
Cindy Borassi (32m 4s):
Yes. It's actually www.eaocrc.org. And you can find all the information there. So that's fascinating. I'll have to look that up because we'd love to bring that to light for colon cancer awareness month.
Terry Wilcox (32m 28s):
Now I just want to clarify here, because I know a few years ago, American Cancer Society came out and said your first colonoscopy needs to be at 45, but it still hadn't with the physicians, and many others was still 50. It is 45. That's the recommendation now, the official, it's not just American Cancer Society, but isn't it.
Cindy Borassi (32m 47s):
So that's a very good question. And the American Cancer Society did change their recommended age a few years ago. However, the U.S. Preventative task force, which is what a lot of the societies will adhere to and follow as well as insurance companies and clinicians and providers, they just came out with their draft recommendations for 45 late last year, and we are still waiting for their official recommendation to be made. And so everyone's kind of holding their breath, hoping that, you know, they'll come out in March, Colon Cancer Awareness Month, but you know, we're expecting hopefully by May or June, that they'll come out with final recommendations so there'll be on the same page, but I want to stress something here.
Cindy Borassi (33m 34s):
There's something that most people, many, if not, most Americans are not aware of. That all of the U.S. colorectal cancer screening guidelines recommend starting screening at age 40, or even earlier, if they have a first degree relative that's had early age onset colorectal cancer, or if they've had what's called an advanced data noma. We're getting very technical here. But, and even earlier in those with hereditary syndrome, which could result in having to get screened at age 25 or younger. So these are guidelines that are already out there, and most Americans are walking around completely unaware, and most clinicians are not talking about this.
Terry Wilcox (34m 15s):
I want to just ask a quick question just for my own knowledge. Okay, so my sister-in-law has one daughter, she's a teenager. So she would be a candidate for an early screening obviously. And how would she know it? Is there a test for her daughter that would let her know if she has any kind of hereditary syndrome or is she just because her Mom had colon cancer at such an early age would be a candidate?
Cindy Borassi (34m 38s):
So this is one of the other things that we are very strong advocates for. It's called universal tumor testing. So, you know, hopefully when your sister-in-law went through her ordeal, they actually did tumor testing or the testing to identify whether there was any genetic mutation involved. And that would have done two things. One, it would have helped to provide very effective precision medicine. And it sounds like she got that cause she's doing well, but that's one benefit. And the second benefit then is to alert them that she has this and she could be passing it on to her kids.
Cindy Borassi (35m 19s):
And so your niece will definitely need to be screened earlier just by the fact that her Mom has had this. But if you've got a genetic mutation involved, that could be a complete game changer and might change when she would need to get screened, it could be even earlier. So that's definitely a conversation that they want to have with their healthcare providers, with their team.
Terry Wilcox (35m 42s):
You know, you do a lot of work in the prevention space obviously. You want everyone to be diagnosed earlier. You want a world without colon cancer. I get all that. But what are steps that average patients and average Americans who may be listening, what are the things that they should know just basic, you know, lifestyle choices. I mean, we know some of them, but what are, what are some of the most prominent things that we should know?
Cindy Borassi (36m 6s):
I was just on another call before this, and it is true that there are multiple studies out there now that very clearly demonstrate that more than half of all cases and deaths and colorectal cancer deaths can be attributed to risk factors that we can change, we have control over. So for example, that includes smoking. It includes an unhealthy diet. It includes, you know, heavy alcohol use, lack of physical exercise and obesity. And I think by now, we all know that these are on the rise here in America at epidemic proportions.
Cindy Borassi (36m 49s):
And so that's one very clear way that, you know, people have control over this and the odds that these risk factors affecting someone's susceptibility to colorectal cancer increase definitely as you age, especially, you know, they see the link in men or in the underserved communities where they may have what we call comorbidities like diabetes or heart disease. So that is definitely one factor that people have control over. And you know, we're not saying give up everything bad for you, but I always liked to say, you think about adding in good things rather than taking everything away. If you can add in one good thing a month or a week or a day, rather than focusing on getting rid of all of the bad stuff, that's just a much more positive way of trying to change things.
Terry Wilcox (37m 46s):
This episode of the Patients Rising podcast is brought to you by Patients Rising Concierge, a new service from Patients Rising that helps patients and caregivers find the resources they need to find stability and support throughout their healthcare journey. From finding a professional advocate, to help with insurance challenges, to legal and tax counsel, to local caregiving resources and so much more, our team is standing by to help you navigate the healthcare system and connect you to the services you need. To learn more, visit patientsrisingconcierge.org, or email us at email@example.com
Dr. Bob Goldberg (38m 35s):
Thanks for that interview, Terry, it was great. Now we're going to the patient perspective of battling colon cancer from someone that you're very close with.
Terry Wilcox (38m 46s):
Yes, my sister-in-law, Cassie, was recently diagnosed with stage four colon cancer in her forties. Cassie shared her story this week with our Field Correspondent, Kate Pecora. Take a listen.
Kate Pecora (38m 57s):
Today, I'm joined by Cassie Frazier. As we've been talking about today, we're headed into March recognizing colon cancer. Cassie has come on to speak about her story and how she's currently battling colon cancer. Cassie, thank you for coming on today.
Cassie Frazier (39m 11s):
Thank you for having me.
Kate Pecora (39m 13s):
So Cassie, you're currently being treated for colon cancer, but I'm wondering if you could actually tell me a little bit about yourself first, because I think that's relevant to your story.
Cassie Frazier (39m 21s):
Yeah, so, okay. So I'm 48 years old. I'm a Mom of a 13 year old daughter and a six year old fur baby Chocolate Lab. I'm married to a wonderful man who is my everything. We've been married for about 17 years. My husband and I are not only married, but we're also business partners. We own and operate a pest control company in the Dallas/Fort Worth, Texas area together since 2008. I was diagnosed with colon cancer, January 16th, 2020, and I'm currently undergoing treatments.
Kate Pecora (39m 53s):
So one of the things you mentioned there is that you're pretty young, right? You're 48 years old. So the current federal recommendation for colon cancer screening specifically through a colonoscopy begins at age 50. So for most people, this would mean that screening for colon cancer isn't covered by insurance until you turn 50 years old, unless you have some other, you know, family history or a risk factor. The science around this number seems to be a bit outdated and with growing technology and early detection methods that we have. So could you talk about what your experience was in screening and how you learned of your diagnosis?
Cassie Frazier (40m 33s):
Okay, sure. So I agree with you though. I do think since all of this has happened, that screening should take place at an earlier age, regardless of your family history. I actually don't have any family history of colon cancer. Since my diagnosis, we have performed some genetic testing and my cancer was found to be a hundred percent environmental, non genetic at all. When I was diagnosed, I had no signs or symptoms to let me know something was wrong. Actually, my husband had convinced me due to my age and just lack of seeing a doctor on a yearly basis that I should go in and get a physical. He had been going in and having physicals and had ran across some minor health issues.
Cassie Frazier (41m 15s):
And he felt like for me and the family that I should go in and get one as well. So I did. I went in thinking that no big deal, I'm going to go in and it's all going to be great. It turned out my blood work showed that I was anemic. So the doctor called me later that afternoon and she told me she was pretty alarmed, wanted me to come in the next day, do another blood test just to confirm the results were right. So I went in, did that, also had a rectal exam. The blood work did come back the same. There was some blood found in the rectal exam. So she referred me to a digestive doctor to do a colonoscopy. Once I had my colonoscopy done, that was on January 16th, detecting a large tumor in my ascending colon, had an MRI to confirm the results on my 47th birthday.
Cassie Frazier (42m 3s):
I was told I had stage four colon cancer that had metastasized to four areas of my liver. I was definitely in shock. I couldn't believe it. I went to three different doctors after that over the next couple of weeks, I discussed plans, did find a perfect oncologist that we feel is perfect for me, and then February 25th started my fight against colon cancer. It's been a long year, had ups and downs, but I remain positive and I will be victorious in the end. I'm going to overcome this is how I feel.
Kate Pecora (42m 33s):
At least in my mind, it seems that because colon cancer is one of the less glamorous cancers. If there ever was such a thing, right? It doesn't always get the awareness and the recognition that it deserves. Right now in my own life, my grandfather is currently living with metastatic colon cancer and even though my Mom is younger than 50 right now, she still felt it necessary to get her colonoscopy this year. So how do you think that these open conversations about colon cancer between families, especially those with known risk, but then also more importantly, how healthcare providers can work with patients about determining their options for screening?
Cassie Frazier (43m 14s):
You know, I've thought about that a lot. I feel like if obviously you do have a family that's at risk and you have somebody in your family that has had the struggle with this disease that you should have screenings earlier in age. I believe that now that I've had it, they're telling me that even my daughter should have screening in her thirties, even though mine was environmental and I didn't have anybody else in my family. And they do think that. And then families that are not at risk like myself, you know, if I would've known about it, if doctors would have been more proactive and told me, you know, you should have a colonoscopy started earlier. I feel that if I would have done it earlier, you know, I may still have come down with colon cancer, but it might not have been the stage four which I was diagnosed with at 47.
Cassie Frazier (44m 0s):
It might've been something a little bit easier to cure and not have to have so many treatments, not take as long. I don't know a lot about a home test. I think there are home tests that people can do now. I think that would be a great option for people just because you're in the privacy of your own home, you can do it on your own schedule. I think it, you send it off and then at least that way it's more comfortable, I guess you could say for somebody, and if there is something wrong, then obviously they could go to the next steps to catch it earlier than obviously than I did.
Kate Pecora (44m 30s):
The last thing that I wanted to touch about actually within the same line of that, is about support systems. Right? And so your family is very important to you. Like you just said, you're thinking about your daughter and her health as well. So especially in the last year, you know, when everybody's kind of been talking about going into their new normal, do you feel like you've stepped into your new normal yet with your diagnosis?
Cassie Frazier (44m 55s):
So as far as, I'll start with support first, we created a private Facebook page at the very beginning. I didn't want to tell a lot of people. I still really haven't told a ton of people. So it's more like really close family and really close friends to kind of keep them all updated of where I'm at. As far as the support, my friends they've reached out numerous ways from calls, texts, cards, just small items to help me with my treatments, meals delivered. I mean, on and on. It's just been overwhelming. As far as my friends have gone. As far as my family, my husband's family, they're basically what I call my biggest cheerleaders through all of this. They keep my spirit up. They show me lots of love with their support as well. And obviously my husband, he's been my rock through all of this.
Cassie Frazier (45m 37s):
He's been my up when I'm down, my sounding board with doctor meetings and questions, my chauffeur to all my appointments, my hand-holder, my nurse, my caretaker, my daughter's caretaker when I couldn't get off the couch for a couple of days due to my ongoing treatments. I feel blessed to have all these people on this journey with me. I don't know if I could have done it honestly, without them. Like I said, we created the Facebook page just to keep everybody updated. It's hard to update people through, you know, 20 different texts. It's easier to put it out there and let people read it on their own time. It gets overwhelming. I don't really feel as far as a new normal, I don't really feel like I have accepted this as my new normal.
Cassie Frazier (46m 18s):
I feel like if I accept it as a normal, it's going to be there. And honestly, I'm ready to get it behind me and go into what the doctors call maintenance mode at that point. I'm praying I will get there soon. My biggest thing that I came up with from the start of all of this was, actually a friend Sean came up with, and it stuck. It's called PMA all the way. PMA basically stands for positive mental attitude. They had some shirts made. My husband wears this shirt that says PMA all the way every time I go to my treatments, it makes me smile and keeps me positive. It reminds me that in the end, everything happens for a reason.
Cassie Frazier (46m 60s):
There is a reason behind this. I don't know what it is. I've definitely had my downs with my ups, but I will honestly remain positive. I feel I will be victorious in the end cancer, we all know really sucks, but I do feel that if I can do this, anyone else can do this who's facing a challenge like me. I think you have to stay positive. You have to stay strong and you just have to realize you're going to beat this. And so I'm going to beat this too, and everybody else can too.
Dr. Bob Goldberg (47m 32s):
Thank you, Kate. And thank you Cassie, for sharing your experiences with us today. The entire Patients Rising community is sending you well wishes and prayers. And now onto a tip from our Patients Rising Concierge desk. Jim is our Patient's Rising Concierge expert. And he's going to give you some ways you can find health resources that fit your needs, location, and budget. Take a listen.
Jim Sliney (47m 59s):
Hello friends, Jim here with a tip from the concierge desk. The most common thing we do is help people find the resources they need. Like Janet, who emailed us saying, and this is edited for privacy, I'm emailing regarding my mental health. I am bipolar with manic episodes, depression and anxiety. I'm having issues locating a clinic in the area I just moved to in North Carolina. I'm not insured. So this makes a difference. Any help would be greatly appreciated. Janet. The impact of the pandemic has a lot of people changing jobs and changing where they live. Also as many as 12 million people have lost their health insurance. So this is a big issue.
Jim Sliney (48m 40s):
Okay? So here's what we did for Janet. We searched for free mental health clinics in her new region. We did that by literally searching free mental health and then the plus sign. And then the name of her town and state. This gave us several useful results, including one resource that actually indexed all free and income-based clinics across the entire country. So we emailed Janet back with those results, but we also explained how we found them so that she had the ability to do it for herself. Now, we also reminded her about the new open enrollment period for healthcare.gov, which was recently announced by the way, it's going to be open from February 15th to May 15th.
Jim Sliney (49m 23s):
So remember when searching for resources in your area at a plus sign and your zip code or your town name to get results that are nearby. And if you need us, we're here toll free at 800 685 2654, or firstname.lastname@example.org. Until next time, Jim.
Dr. Bob Goldberg (49m 52s):
Thanks, Jim, and thanks to the entire Patient's Rising Concierge staff, and you can find the link to the Patients Rising Concierge services in the show notes. And because the point of our show is to bring patient stories to the lawmakers who need to hear them, we're on the lookout for patient correspondents for upcoming episodes. So, if you'd like to discuss a policy or healthcare issue, impacting you or a loved one, just send an email to Terri and me at email@example.com that is firstname.lastname@example.org.
Terry Wilcox (50m 24s):
Thank you so much for joining us for today's episode. We would be so grateful if you could just take a few seconds right now to leave us a rating and a review on Apple podcast. This helps us reach even more listeners and allows us to continue bringing you honest healthcare policy news insights.
Dr. Bob Goldberg (50m 43s):
And don't miss out on any of our upcoming episodes, hit the subscribe, actually don't hit, just touch it gently to your favorite podcast app. And that way you'll get the newest episodes delivered straight to your phone next Friday, and every Friday after that.
Terry Wilcox (50m 58s):
We'll be right back here again next week for another new episode. Until then for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox, keep your distance and stay healthy.