Fight Colorectal Cancer, with Reese Garcia

Episode Transcript

Dr. Dac: Hello, and welcome to “The Colon Health Podcast” brought to you by colonoscopy.com. My name is Dr. Dac Teoli, and today we have another exciting episode to bring with you a special guest, Reese Garcia.

It’s no surprise for our listeners that colorectal cancer is a big deal. And that’s putting it lightly. Some statistics to bring to you today from the well respected and celebrated organization called Fight Colorectal Cancer, also known as Fight CRC, include the following: colorectal cancer is the second leading cause of cancer death, unfortunately, when combining data from men and women in the United States. In fact, 1 in 23 men and 1 in 25 women will be diagnosed with colorectal cancer during their lifetime. That’s scary. Unfortunately, one in three people were not up to date with colorectal cancer screenings. But, some good news is that affordable take-home options exist such as Cologuard from Exact Sciences. You can learn more about that on our prior episodes.

But, a sad trend has risen where Black Americans are more likely to be diagnosed and die from colorectal cancer than most other groups. Another disparity, if we can call it that, includes that less than 50% of Asian Americans are up to date with their colorectal cancer screening as well. There is another pattern which has begun to reveal itself, and I wish I had good news. We’ll get to some of that in a minute. But, while colorectal cancer in older adults has started to show a decline, unfortunately, rates have been increasing in the younger populations. Listen to this, 1 in 10 colorectal cancers are diagnosed in patients under 50 years old. And while you might either personally know or in your social network have associates and notice this frightening trend where it seems that this cancer is running in family lines, family trees, you aren’t far off the mark in that 25% to 30% of these patients have a family history of this disease.

While physicians, health care systems researchers, they all play an important role in the national and global battle against this condition, there are a number of patient-centered organizations which are just as important. One organization that comes to my mind is Fight Colorectal Cancer or, as I mentioned earlier, Fight CRC, based out of Springfield, Missouri. And that’s why I’m so happy today to have Reese Garcia here to join us. So, Reese has been with Fight CRC since 2017. She’s the organization’s senior manager of research advocacy and works day after day for the patients and their families across the country who live with this condition. Thanks so much for being here today, Reese, and thanks for all you do for the patients that are battling this condition.

Reese: Yes. Thank you so much for having me, Dac. And I’m happy to be here and look forward to chatting with you.

Dr. Dac: Awesome. I hope I did justice to the organization. And while I just provided some broad strokes, I wouldn’t be surprised if there are some points that you wanted to make regarding your organization. Maybe not necessarily even in regards to the advocacy points yet, because I definitely wanna dive into those, but, just broad strokes, anything else you wanna let us know about Fight CRC?

Reese: Yeah, absolutely. You did a great job with the introductions and covering the ins and outs. But, one thing I would add is that, when Fight CRC was founded back in 2005 by our Founder and Co-Chair of the Board, Nancy Roach, it was very apparent at that time that the patient voice was not infused into research or policy. And there was a big lack of understanding of the patient’s needs at the time. So, the whole reason Fight CRC was really created was out of this need to include the patient voice and patient centricity viewpoints. And so I think that’s really important. And, now, when we talk about our programs, and our research, and our patient education materials, for example, everything we do is from that angle of the patient voice and the needs of our colorectal cancer community. So, I think that’s really important to know and really important to consider when thinking about some of these things.

Like you mentioned, we are an advocacy organization, but we also do a lot of work around research and supporting the research as well as creating patient education and materials that reach the community. So, those are really the three pillars of our organization that make us who we are today.

Dr. Dac: That’s phenomenal. You mentioned the resources. And I was… Just recently, when I was on the website again, fightcolorectalcancer.org, you weren’t kidding. You guys have a lot of resources out there, not just from educational videos, but also things like the “Beyond Blue Magazine.” Can you tell us a little bit about that?

Reese: Yeah, absolutely. We do have a plethora of resources. Our “Beyond Blue Magazine” is really what we consider our side table magazine. So, it’s the magazine that people can pick up and read whether they’re sitting in the chemotherapy chair or waiting for their cancer appointment. And we cover a lot of topics that are relevant to the patient in the moment. So, our upcoming Beyond Blue is really gonna be focusing on nutrition and diet, covering topics like the microbiome and the different ways to manage side effects with food. So, it’s very exciting to see the different topics that can come out of Beyond Blue, again, knowing that it’s really covering kind of those hot issues for the patient at the moment. I will say we also provide webinars, podcasts, what we call Mini Magazines. And so those are magazines very specific to topics like genetics, or biomarker testing, clinical trials, and skin toxicity. And so they’re really an abridged version of everything a patient might need to know on these specific topics.

And then our flagship research resource, which I think is really important, is called Guide in the Fight. And that’s super important for anybody who is newly diagnosed stage three or stage four with colorectal cancer. So, that walks people through everything they need to know from the day they’re diagnosed all the way through end-of-life care and everything in between. So, like you mentioned, we do have a robust library of resources. And we try to make sure all of them are reaching the community at different areas and aspects of their cancer and survivorship journey.

Dr. Dac: And it’s tremendous. For our listeners, and maybe our listeners have family members, friends, neighbors that they wanna direct to these resources that we’ve been discussing, where could they find these? Where do they need to go?

Reese: Absolutely. If they go to fightcolorectalcancer.org or fightcrc.org, either URL works, there is a easy-to-find button called Resource Library. And from there, you can filter based on topics or language. We’ve recently introduced some Spanish resources into our library amongst other filters. So, it’s a relatively easy-to-find area on our website.

Dr. Dac: One thing I like about Fight CRC is that, as you mentioned, it is, you know, patient-centered. A lot of the organizations frame themselves that way. But, it seems like this organization in particular really lives up to that title. A lot of the resources for maybe other organizations, I looked through it and the patient resources are just written at a level that is not easily digested or understood by just your layperson. Not everyone’s majored in biology, not everyone went to nursing school or medical school. So, I really like that a lot of your resources…but, as you mentioned before, almost like a side table magazine, you can just pick it up and read it and appreciate where things are without having to go to a medical dictionary or anything like that.

Reese: Absolutely. It’s a great opportunity to bring the patients in where they can be the most beneficial loud voice at the table. One thing I would also add that I think touches on this and the importance of bringing the patient voice in is we have a program called the Research Advocacy Training and Support Program. And we abbreviate it short RATS. And it’s a very well-known acronym that sticks. But, essentially, what this program does is takes it a step further and trains patients and advocates on high-level scientific principles all the way from bench science to bedside science. And the goal of that, not only can these advocates events in their community, but they can also sit on panels with researchers and be that patient voice that’s really keeping track of where the research is going and providing insight into clinical trial design review and into materials for other organizations and industry companies as well. So, I think that’s one of the ways that we can really bolster the patient voice and show the proof is in the pudding and how the action can lead to better outcomes for all.

Dr. Dac: Well, I have my homework for tonight, it sounds like.

Reese: Absolutely.

Dr. Dac: And the portal you mentioned as well, there’s…as you were alluding to the advocacy training portal. And that also had some other pretty interesting, what, trainings or just educational material for our listeners in the general population as well. Say, if they wanted to know how to reach out to a politician, I believe they had resources on that, for example.

Reese: Yes. So, we do have an advocacy training portal, which is relatively new within the last year. This portal really provides resources for those who are interested in advocacy on telling your story, how to work with the media, how to engage legislators on social media. And then, of course, it provides information on general advocacy, including our specific legislative goals, the ins and outs of Congress, and then, of course, how to prepare for Hill meetings. And so all of that really trains patients to be able to go to the Hill. Of course, this year it was virtual. But, in years past, we go to the Hill in March for Colorectal Cancer Awareness Month. And we speak with our legislators and really encourage them to prioritize policies for colorectal cancer patients in their community. And so this portal gears the community up to be able to have those conversations to advocate at both the federal and the state level and to really push for better policy change.

Dr. Dac: So, you, your team, your organization, you’re really there on the front lines when it comes to advocacy. It’s not just someone coming up with good ideas behind a desk and never put in a feet on the ground. As you mentioned, you’re actually having…when everything is not virtual, otherwise, you guys are really having people out there, physical people out there doing what they need to do.

Reese: Absolutely. And I would say in years past, we’ll have 150 plus advocates, caregivers, patients, and even several providers and researchers join us on the Hill and push for that change. This past year, of course, we were virtual. And we saw much higher engagement from afar, knowing that it was an online opportunity. But, we really do our best to make sure that everyone has a place that they can advocate. Whether it is for policy change, whether it’s for research, or whether it’s hosting events and fundraisings, there’s a space for everyone to get in.

Dr. Dac: Good information, not just for me, but all the listeners out there. And you mentioned the advocacy priorities earlier a little bit. Is there anything more you can tell us about some of maybe even some specific priorities and initiatives that have been coming through your organization?

Reese: Yeah, absolutely. So, we have several priorities. In terms of our federal priorities, our goal is really to educate policymakers, like I mentioned, that colon-rectal cancer community is represented and that they’re involved in the creation of these policies. So, to do that, we advocate for funding at both the National Institute of Health, NIH, and the National Cancer Institute, the NCI, to develop new treatments and cures for colorectal cancer. We have advocated to create a colorectal cancer research program within the Department of Defense, the DoD Congressionally Directed Medical Research Program. Currently, it falls under the Peer-Reviewed Cancer Research Program, which is slightly different. And by creating another research program in the DoD for colorectal cancer, that opened the doors to more research funding and opportunities specific to colorectal cancer.

And then we also advocate for funding for the CDC Colorectal Cancer Control Program to really implement evidence-based programs that are aimed at increasing screening, particularly in underserved communities. I will say, at the state level, we advocated hard to lower the screening age for average-risk individuals to 45 and 50. And several months ago, the United States Preventive Services Task Force actually updated their recommendations and to lower the screening age to 45 as well. So, that was a really exciting win. And you mentioned it in the beginning that colorectal cancer is rising in those under the age of 50. And it’s a very concerning trend. And so that’s a really good example of how the research informed policy and, from there, we were able to advocate and actually get some movement and change in the screening age. So, that’s a little high-level overview of our priorities. Of course, we have many more that we work on a much different level. But, essentially, it’s at the heart of what we do. And although we talk about policy on one side and research on the other, they are very intertwined and inform each other to a much fuller extent.

Dr. Dac: Great. That list of organizations that you’ve been working with at the government level and down, those are pretty heavy-hitting organizations and entities. On one hand, I’m surprised to hear about your guys’ involvement with getting the screening age down to 45. And on the other hand, I’m not surprised at all because, as you’ve been alluding to, Fight CRC is about results. I mean, ultimately, it’s about the patient and their families. But it’s not just lip service. It looks like you guys really get the job done oftentimes and at least keep on fighting until you get the job done.

Reese: Absolutely. And a lot of that was in parts of our community. I keep going back to the inclusion of the patient voice. But we could not do this without our partners and our community of relentless champions of patients, caregivers, and providers. They’re really behind all the work that we do.

Dr. Dac: So, the annual Call-on Congress event, I believe you said is gonna be virtual again this upcoming time, right?

Reese: We’re still deciding that. That is to be determined. We were virtual this past spring. But, of course, paying attention to the course of COVID and whatnot, we’re keeping our options open. So, a decision has not been made, but I’m hoping that it will be in-person. I truly am. It’s a fantastic event. When you see 150 people storm the Hill, it’s pretty transformative.

Dr. Dac: And that event strikes me as the big one, like the Super Bowl. What about… And you might have alluded to some of these as well. But other events that our listeners just wanna hear about, again, maybe they aren’t able to go to the Capitol. Any other events, whether they’re actually scheduled now or anything maybe even that you and your team might be considering in the future that folks could get involved with?

Reese: Yeah, absolutely. We just wrapped up our Third Annual Early-Age Onset International Symposium called The Rally on Research. And that was actually back in June where we brought together international experts and patient advocates to come together and really discuss a path forward to addressing and researching early-age onset colorectal cancer. So, although that was in the past in June, we’re hoping to have that again next summer in a hybrid fashion for both in-person and online. And then what I’m really excited about is this month, actually, in about two and a half weeks, a group of fighters, the staff, and the survivors, will be meeting at Lake Tahoe in California to host our annual Climb for a Cure event. So, Climb for a Cure is our pivotal fundraiser each year where people show up, they hike a mountain, we raise money in honor of all those survivors and those that we have lost.

So, there’s a few ways to still get involved with Climb for a Cure. Our in-person has actually closed, unfortunately, with it being so close. But, there’s a community climb where anybody who’s interested in fundraising and forming a team can still do so, whether they want to hike, walk, jog, or really participate in any physical activity, and take part in the virtual celebration. So, for anyone that’s interested, they can also find that opportunity on our website at fightcolorectalcancer.org under, I believe, it is Volunteer or Get Involved, but relatively easy to find. Happy to provide some links as a follow-up. But that is an exciting event because we will be hosting a very small in-person gathering for the first time in over two years.

Dr. Dac: Wow. That’s gonna be long overdue, and then people are gonna be excited about that.

Reese: Absolutely. I’m very much looking forward to it. It is one of my favorite events that we host.

Dr. Dac: You made a really good point when you mentioned survivorship. Oftentimes, and even I make this mistake, sometimes I think about things like colorectal cancer, and I think only of the patient, the person, whether it’s sitting across from me in the exam room, or you name it, but, really, it goes beyond that as well because their family has to not just live with that diagnosis of their loved one but the treatments, the decisions. What about the patients that actually survive their condition, whether they have a full treatment or whether they’re just long term living with colorectal cancer? You mentioned survivorship, and that’s a pretty significant portion of folks as well. People might think, well, hey, they were cured, whether they had surgery, chemo, radiation, you name it, they were cured. Oh, now, everything is great. But a lot of these folks still have that trauma, that stress of that diagnosis that they cared for so long, and it’s good to see your organization support them.

Reese: Absolutely. And we recognize that survivorship really is this continuation from essentially diagnosis through survivorship. There’s no clear endpoint. And so one of the things we actually launched recently was a survivorship care planning resource series. And it really covers how to talk to your provider about creating a survivorship care plan after treatment ends and how to address physical activity and nutrition, managing mental health, and then, of course, living life as a cancer survivor, especially for those that might be on maintenance therapy. And so we really take in what we’ve heard from our community and what we’ve seen through our actions and have compiled a list of our triage, I should say, resources that really will help people through their survivorship care planning journey. I think, like you mentioned, it’s crucial. And oftentimes, we forget that once a patient has ended their treatment, cancer is far from over. Even if there are no evidence of disease, there’s still lots of side effects, both physical and mental, that come along with a cancer diagnosis that are necessary to be addressed both with a patient’s loved one but also their care team.

Dr. Dac: One hundred percent. Say, someone’s listening today and they want to maybe become a sponsor or they wanna make a donation to Fight CRC. Can you provide us any information about how they should go about that?

Reese: Absolutely. If anyone’s interested in partnering with us or becoming a sponsor, they can email patientinfo@fightcrc.org. And then, again, if anybody is interested in donating, or creating a fundraiser, or joining us for a Climb for a Cure, they can go to fightcrc.org/donate, and everything they need will be right there.

Dr. Dac: Thanks for sharing all that info. And we’re gonna have all that up on the portal as well on colonoscopy.com. Out of respect for your time, because I know that you’re busy, your whole team is busy just fighting the good fight here, I’m curious if you have any parting thoughts for us or our listeners, anything that we haven’t touched upon yet that you wanted to make sure that we hear.

Reese: The only thing I would add is, if anybody is listening today and is interested in getting involved, please do reach out, please do visit us. There’s plenty of ways to integrate one’s experience, whether they lived through colon-rectal cancer, or whether they supported somebody who went through colorectal cancer, or whether they’re just very interested and got involved in getting in the fight. I think there’s lots of ways to meet people where they’re at and that they can fuel their passion and their experiences towards the fight. Like you said, it is a debilitating disease for those that are facing it. We’re seeing it get younger, affecting different populations more so than others. And, again, everyone has an experience and background that can really help us in this fight. So, we’d be ecstatic to reach those out there as well. And I really appreciate your time, Dac. This was fantastic. And I really enjoyed speaking with you today.

Dr. Dac: Now, the pleasure is all mine. It looks like fightcolorectalcancer.org. And then did you mention there’s also an alternate URL that people can go to?

Reese: That’s correct, fightcolorectalcancer.org or fightcrc.org will take you to the same landing page.

Dr. Dac: Perfect. Again, I wanna thank you, Reese, for being here, and I wanna thank all of our listeners who tuned in today. Whether you’re at work, on your commute, or at home, be sure to like this episode and share it on your social media. Be sure to reach out to us and let us know what you wanna hear about in the future. And reach out to us and let us know about your experience with Fight CRC. It’s a tremendous organization. I can’t say enough about them. You can go on to the colonoscopy.com website and get more resources, many of those resources that we discussed today during this episode. Also, you can learn more about Reese and more about the Fight Colorectal Cancer organization. I wanna thank you all again one last time for being here. Good health, and good night.