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Colorectal Cancer Awareness Month: Improving Research Through Advocacy With Allison Rosen, MS, and Matthew Hadfield, DO

In honor of Colorectal Cancer Awareness Month this March, Allison Rosen, MS, and Matthew Hadfield, DO, members of the OncData Editorial Board and Fellows Forum, sat down to discuss their perspectives on the month from both the clinical and survivorship viewpoints, including efforts to advocate for increased clinical trial funding, recent updates in research and treatment, and messages for both patients and the public about the importance of screening and raising awareness.  

Matthew Hadfield, DO: I'm Matt Hadfield. I'm a third-year Medical Oncology Fellow at Brown University's Legorreta Cancer Center in Providence, Rhode Island. I'm currently in the process of transitioning into being a Junior Faculty Member focused in early-drug development and phase 1 clinical trials, as well as melanoma.

I'm talking today with Allison Rosen, who has the very unique and interesting perspective of being a cancer researcher who had this horrible experience of being diagnosed with colorectal cancer and now is thankfully here to be sharing all she's done in terms of advocacy and work to promote cancer awareness and research. Allison, would you like to introduce yourself?

Allison Rosen, MS: Sure, I'm Allison Rosen. I am a 12-year colorectal cancer survivor and a very passionate advocate. I've worked in oncology for the past 17 years professionally, so my goal is to help bridge the gap between health care professionals and the communities that they serve, because I've served, worked, and volunteered on both sides of the fence. I attend conferences and do advocacy as a survivor. I appreciate everything that my health care providers did to save my life, so my purpose is to help educate, advocate, and collaborate with as many people as I possibly can.

Dr. Hadfield: It's so good to be able to speak with you today, and as I said before, thank you so much for what you do. I think patient advocacy is one of the most important things that we're now starting to integrate into the realm of cancer care and cancer research. It's something that we didn't spend enough time giving the spotlight to in the past, and it's so good that you're here to talk about these things.

To kick off Colorectal Cancer Awareness Month, particularly important this year is the unfortunate trend of earlier-onset colorectal cancer. We have new guidelines with colorectal cancer screening in terms of the colonoscopy age being younger at age 45. There's certainly a very concerning trend that's been seen by myself and other physicians who take care of cancer patients. What's your perspective on that, and what are some of the conversations that you have had in the advocacy circles about what's been going on?

Ms. Rosen: Obviously, we're really happy that the screening age was lowered to 45. If people like me had our way, screening would be available to anyone, but we know the research has to match the guidelines. The big thing with that is ensuring that the awareness is there. It's been age 50 for so long, and now we have this huge 45 to 50 age recommendation, and we just want to spread awareness. We're trying to tell our stories more, do more campaigns surrounding age 45, and just make sure people know that they have access, that they can get that screening, that it is available to them, and that there are options.

I really think it's a similar message to before, but targeted at individuals aged 45 to 50 now. We all know this new guideline as survivors and patients and advocates, and you know it as a professional. But the average person, who doesn't necessarily go to their doctor often, maybe once a year, might not know that it's now 45 and that the research shows that it could save your life. I say this very openly—a colonoscopy and a screening saved my life. I think you need to get that before you actually have signs and symptoms. It is potentially preventable. And that really is the message we're getting out there.

Dr. Hadfield: Absolutely, that's so well stated. I think we're also still getting past COVID, where so many cancer screening diagnostics were delayed for so long, and it's another unfortunate trend that we're seeing this as well. What are some of the other things that have been going on in regard to advocacy or big topics of discussion that you'd like to highlight going into Colorectal Cancer Awareness Month?

Ms. Rosen: For me, I think there are two things. First, I'll be in Washington, DC, next week with Fight Colorectal Cancer. A lot of the policy that we're trying to advocate for is more research funding, because everything starts with research. I worked in research for 12 years. You have to start with the research, then you get the new drugs or more drugs that are out there, then you get more options for treatment. We're advocating for Centers for Disease Control (CDC) funding and Department of Defense (DOD) funding, trying to make sure that we have the funds so that researchers can do their jobs.

When I was treated, the standards of care were radiation, chemotherapy, and surgery, and now there's so much out there as far as immunotherapy and targeted therapy and circulating tumor DNA (ctDNA). We'll talk about some of that in DC, but we're really trying to push for more research funding. There's a lot more funding out there than there was even five years ago. When someone is diagnosed, their treatment can be more personalized, versus, "Here, we're going to throw everything and the kitchen sink at you." If that's what the best treatment is, that's fine. But especially with the younger population, if you can give them treatment that's specific for their tumor marker or their specific type of cancer or their stage or where they are, you can increase quality of life, and that's huge.

With the stat that colorectal cancer is now the number one leading cause of cancer-related death in men and number two in women under age 50, they're going to live longer, and they're going to have a lot more survivorship issues. I deal with them daily, even 12 years later. Policy-wise, more research is important, but so is making sure that research is focused on targeted therapy, immunotherapy, and treatment that could lessen the long-term side effects.

Dr. Hadfield: That's so well said, and you touched on so many important points. I think advocacy in DC is so important. I was just in DC earlier this week advocating with the American Association for Cancer Research (AACR) for increased National Institutes of Health (NIH) and National Cancer Institute (NCI) funding. As someone who works in early-phase trials, I can see that any FDA-approved therapy really starts with NIH-funded, university-backed research, and really that's how we spark those innovations.

Another really important thing that I don't think we've talked enough about in the past, but we've started to now, is the patient perspective in terms of their treatment, how to get more targeted therapies, and how to limit toxicities. We're starting to see, can we get away from maximum tolerated dose in phase 1 trials and achieve efficacy at lower dose? Can we tailor treatments better to optimize cancer patient experiences and minimize their symptom burden? I think it's so important that we keep bringing those issues up.

The last thing I'd like to say, that I'm so happy you brought up, was circulating tumor DNA. At the American Society for Clinical Oncology Gastrointestinal Cancers Symposium (ASCO GI) just a couple months ago, there were two very, very interesting trials that showed that circulating tumor DNA can really be beneficial in predicting response or predicting need for adjuvant chemotherapy in resected colon cancer. We're starting to finally get to the point where ctDNA is finding its place in how we use it in terms of risk of recurrence and stratifying patients. It's one more step towards more personalized health care. I think those are all just such important points to make.

Ms. Rosen: Agreed. Today is the first day of Colorectal Cancer Awareness Month—I have no idea when the audience going to be listening to this, but no matter when you're listening to this, even if it isn't in March, I'll just say that colorectal cancer is unfortunately not going anywhere. We have to work together—the advocacy organizations, the survivors, the patients, the caregivers that are passionate about the cause, and all of you that are doing the research and doing the treatment. If we all work together, I do truly believe that we can lower the incidence and lower the mortality. We can make the conversation—which isn't the most comfortable—happen at the dinner table about family history, the importance of screening, prevention, and early detection.

I do a lot of social media advocacy, and I talk about colonoscopy, I talk about stool-based testing, I talk about all the different things in colorectal cancer. People say, "I'm scared to have a colonoscopy. I don't want to do the prep." I've had, I don't even know how many colonoscopies at this point, but I've had so many, so I talk about the options. Just like with treatment, there are a lot of options for screening, especially a lot of prep options if colonoscopy is your screening of choice. I want people to know their options. You don't have to do that four-gallon jug of liquid. There are pills, there are low-volume preps, there's all sorts of things.

My message to people who are looking to get screened, who should get screened, is to talk to their doctor, have a conversation, and use shared decision making. That's a very technical term, but decide together with your doctor what's the best option for you as far as screening.

Dr. Hadfield: Absolutely, and I'm glad you brought that up as well, because there is a lot of hesitation around colonoscopies, the prep, what it looks like, and side effects. A lot of patients think that it's going to take days in the hospital or that it's almost like a surgery. More education is important, but also just widening the scope of what is available. Colonoscopies are not the only way we test for colorectal cancer. In my counseling of patients in the past, if they were vehemently against getting a colonoscopy, another type of testing is better than nothing.

I think that's a message that we need to keep getting out, there because like you said so well, colorectal cancer is not going anywhere, unfortunately. I think even though we've had such huge advancements with targeted therapy and immunotherapy, we unfortunately still have a long way to go, and there's still a high mortality rate in advanced disease. There's lots more to figure out, unfortunately.

Ms. Rosen: Like you said, the best test is the one that gets done. Whatever you can do is what you should do.

Dr. Hadfield: Absolutely. With the last few minutes that we have here, what's one thing that you're most hopeful about in the future of either the screening of colorectal cancer, the epidemiology, the treatment, or any of the above?

Ms. Rosen: I think the thing that I'm most hopeful about as I attend scientific conferences and go to advocacy events is the change in the trajectory of the treatment. Like you mentioned earlier, it's changed so much over the past 10 years. As we advance and have more research, then hopefully people are getting diagnosed if they are at earlier stages. Even if it's a later stage, there's better treatment for them so they can live longer and/or they can survive this disease. At one point, when someone was stage IV, it wasn't the best outcome. I'd love for the percentage of survival to increase no matter what stage you are.

Dr. Hadfield: Well said. Well, it's been so nice talking to you today. I hope you have a great trip to DC, a safe trip, and a productive meeting with our representatives, helping to reiterate that message that this research funding and advocacy is so, so important. Thank you so much. It's been so nice talking to you.

Ms. Rosen: You too. Thank you.

Dr. Hadfield: Take care.

About the Speakers

Allison Rosen, MS, is a colorectal cancer survivor and a patient advocate who uses her platform to educate, support, and represent the cancer community. She works as a patient advocate with numerous organizations, including Fight Colorectal Cancer, the National Coalition for Cancer Survivorship, the Colorectal Cancer Alliance, Southwest Oncology Group (SWOG) Cancer Research Network, and MD Anderson Cancer Center. Ms. Rosen is passionate about bridging the gap between the health care system and the communities that it serves.

Matthew Hadfield, DO, is a Hematology/Oncology Fellow at Brown University/Legorreta Cancer Center in Providence, Rhode Island. His research focuses on melanoma and early-phase clinical trials, including development, novel immunotherapeutic combinations to overcome therapeutic resistance, and predictive biomarkers for immunotherapy toxicities.

For More Information

American Association for Cancer Research (2024). March is Colorectal Cancer Awareness Month. Available at: https://www.aacr.org/patients-caregivers/awareness-months/colorectal-cancer-awareness-month/

Fight Colorectal Cancer (2023). Available at: https://fightcolorectalcancer.org/

Transcript edited for clarity. Any views expressed above are the speakers' own and do not necessarily reflect those of Oncology Data Advisor. 


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