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Brigid Bergin: You're listening to all of it on WNYC. I'm Brigid Bergin in for Allison Stewart. On Monday, saxophonist James Casey, who was a guest on the show late last fall, died of colon cancer at the very young age of 40. It was exactly three years to the day after Chadwick Boseman died of the same disease at the age of 43. Unfortunately, this isn't just a tragic coincidence. According to the Colorectal Cancer Alliance, colon cancer is one of the deadliest cancers and disproportionately affects men of color, and it is currently the leading cause of death of men under 50 among all races.

When James Casey was on the show, he openly discussed his battle with the disease and spoke of taking part in raising awareness through a campaign called They Didn't Say, which was in partnership with the Colorectal Cancer Alliance. In his honor, we wanted to take a little time on the show to educate people about this deadly but largely preventable cancer. In a little bit, we'll hear a bit of James Casey's interview with Alison. First, we have Angele Russell, senior director of partnerships and health equity from the Colorectal Cancer Alliance joining us. Angele, welcome to all of it. Thanks for joining me.

Angele Russell: Thank you for having me.

Brigid Bergin: First of all, the Colorectal Cancer Alliance has set up a fund in James Casey's name. Can you tell us a little bit about it and where listeners can go to donate?

Angele Russell: Absolutely. The alliance has just so many great memories with James. He has been such an incredible advocate for raising awareness for colorectal cancer screening and raising awareness about young-onset colorectal cancer. We have worked with his wife, Ayla, and his family to really honor James's legacy and the work and energy he put into raising awareness about the disease. If you want to donate to that fundraiser, which goes to really helping us do the critical work of raising awareness and helping remove risk factors and barriers to screening, you can go to our website at ccalliance. org.

Brigid Bergin: We'll make sure that information is also available on our site so listeners can find it. I want to make sure that we are using our terms properly. Is there a difference between colon and colorectal cancer?

Angele Russell: There are differences between colon and colorectal cancer. We address both of those cancers, which is where we get the term colorectal. When we think about the large intestines, that's what we're mainly referencing when we think about colorectal cancer. Colloquially, it's just known as colon cancer.

Brigid Bergin: Okay. What is it that makes these particular cancers so deadly?

Angele Russell: One of the issues with colon cancer is that although it can be a slow-growing cancer, it doesn't present any symptoms, I should say, before it reaches at late stage. A lot of times people are developing polyps and the tumor could be growing at an exponential rate but there are no real symptoms that are presenting. Really, once you start seeing symptoms is when you know you're very likely in a late stage. Some of those symptoms include issues with bowel movements and blood in the stool.

Brigid Bergin: Is there some type of stigma attached to this particular cancer that maybe keeps people from getting help or even really discussing it as much as other cancers?

Angele Russell: One of the things that we always have a hard time with with talking about our bodies are talking about the things that we do in private. When we think about having bowel movements, it's not something that would come up on a regular conversation with anyone. There's an inherent stigma around talking about colon cancer, especially some of the symptoms that are associated with it, which are mainly GI symptoms.

Also in different communities, talking about anything related to that area of the body can be difficult, and there are high stigmas associated with that as well. When we think about how to raise awareness and spread the message to different communities, we really try to think about how to meet people where they are and understand how the messages can reach them in an effective way. Sometimes we won't use the term colorectal cancer because that feels so medical, it feels so technical. Using the term colon cancer or just talking about colon health and GI health in general sometimes can open up doors to talking about more details such as colorectal cancer and colon health.

Brigid Bergin: I think part of what you're talking about is maybe some of the cultural challenges to talking about the cancer. I'm wondering what you can tell us about what the research says about why this disproportionately affects people of color.

Angele Russell: Absolutely. Black Americans are 20% more likely to be diagnosed with colon cancer and 35% more likely to die from colorectal cancer. Those disparities are exacerbated by issues around lack of screening, social determinants of health, which includes access to quality health care, lack of healthy food options, where you live, even structural racism, bias and believability are huge issues. Part of James' story was around him going to the ER and being told he had colitis when he really had colon cancer. Those are very real issues that we don't talk about enough, but that severely impact the disparities related to colon cancer.

Sometimes there are practical issues such as just the inability to take off to go get the screening. For colon cancer, colonoscopies are the gold standard for screening, although there are tests that you can take at home now, but even taking time off to go get those tests or to go get the colonoscopy, which involves doing a prep and then going into the hospital, and you need time off for that.

Brigid Bergin: You usually can't go by yourself, right? You need to have someone with you. It's not just your time, it's someone else's time.

Angele Russell: Correct. Even thinking about lack of childcare and then getting into mistrust can open up a whole other conversation about some of the issues related to the barriers we're seeing.

Brigid Bergin: Let's talk about your organization and what you're doing to try to counter these stats and some of these really seemingly structural obstacles.

Angele Russell: What we are doing at the alliance, we take a very integrated approach. We think about this from an intersectional perspective, especially the work that we're doing along the lines of health equity. We are working within communities. We have volunteers that are all across the country who are working with what I call community mayors on the ground to help understand what issues are specific to that area. Even language and literacy we take into account when pulling out interventions for that particular area.

We also have awareness campaigns that we do to raise awareness on a larger scale. In terms of the work that we're doing with patients, we have a ton of-- what do you call it? We have a ton of the-- I'm sorry, I can't even think about who they are. They are the patient navigators. That's what I was thinking about. Our patient navigators and screening navigators who really help to guide patients through their cancer journey once they are diagnosed with colon cancer. Absolutely, we think about it at every single step and we have interventions at every single step as well.

Brigid Bergin: Can we talk a little bit more about one of your awareness campaigns, the They Didn't Say campaign, which James mentioned with this conversation with Alison? Talk about the goal of that and how it works.

Angele Russell: The goal of the They Didn't Say campaign is to help remove the stigma and to encourage Black Americans to really know their risk. One of the things that James was a huge proponent of was to discuss your family history with the people that are around you. I myself had a friend who passed away at age of 33, and she did not realize colon cancer ran in her family until after she was diagnosed.

If you have a family history of colorectal cancer, you need to be getting screened at least 10 years before the youngest person was diagnosed. Thinking about that, if someone was diagnosed at the age of 33, then you would need to start getting screened around the age of 23, but we don't know that if we don't really have those tough conversations with family. I know that we are going into the holiday season and we spend more time with family just thinking about those opportunities to really raise that conversation and become really well-known about your family history, I think can make the biggest impact.

Brigid Bergin: When you say family history, we're talking parents, grandparents extended family, how should people be thinking they should draw that circle in the context of could I potentially have this impact is a genetic function?

Angele Russell: What I would say is one of the first things that you can do is think about your first-degree relatives. We're thinking about sisters, we're also thinking about parents, and then even from there, thinking about grandparents. One of the quickest and easiest ways that you can even start thinking about what those risk factors are is to go to our website which has a screening quiz that you can take.

It's completely free and you don't have to enter in any of your personal information. It allows you to go through some of those risk factors such as family history, such as your GI symptoms and then you receive a screening recommendation at the end. Some of it would just say, "Go speak to your doctor," just to start the conversation around family history. Some of it will say to go and get a colonoscopy immediately.

Brigid: You mentioned colonoscopies as the gold standard. Are there any other screenings that are also recommended?

Angele Russell: Yes, anything related to your health journey, if anything is different with your body. Our bodies are such complex machines, and thinking about your GI health can really impact something else in your body as well. When I think about that, if there's anything off in your body, just go speak to your doctor. I know that a lot of people that we are trying to reach don't actually have a relationship with a physician or a medical provider.

Even if you want to start that conversation, you can easily call the alliance and we can help you get started on that journey but I would absolutely say pay attention to your diet, pay attention to any changes that you have in your GI system. Sometimes that could even just feel like bloating which a lot of us [laughs] go and take some pills or take some medicine and make that go away but if it just continues to come back and nothing is helping, absolutely seek out help.

Brigid Bergin: When James was on, he mentioned that insurance didn't always cover screenings when the patient was under 40, and yet it's affecting men who are younger than 40. If you do have this family history or symptoms and you're younger than 40, any recommendations for how you can get the screening that you probably need?

Angele Russell: What's really interesting about that is my friend who I told you. Her name is Shannon [unintelligible 00:13:18], and she passed away at the age of 33.

Brigid Bergin: I'm so sorry.

Angele Russell: She was not able to get her colonoscopy covered by insurance because of her age. She was only 31 at that time. If you find yourself in that situation where you have active symptoms and you know that a colonoscopy is indicated `but you can't afford it, please contact us. We have access to resources that are available. In fact, we have a partnership with Cottonelle and BLKHLTH, which is another organization dedicated to increasing screening rates where we provide free colonoscopies to Black Americans, which is again, another barrier that we're trying to address.

We're happy, even if you don't qualify for that program, we have access to other programs but I would also say speak to your healthcare provider. Also, speak to patient advocates at the hospital that you are getting your colonoscopy from. There are plenty of resources out there. We just need to connect them to the people who need them the most.

Brigid Bergin: That's great information. I'm wondering to the extent you know, is there thought being put into changing those cutoff ages for screening, maybe lowering them for men and for women?

Angele Russell: Yes. The US Preventative Services Task Force recently recommended to lower the age from 50 to 45. We are always advocating to lower that age, especially right now that we know that young onset is on the rise. It is already known, rather, that colorectal cancer will be the number one indicated cancer for people under the age of 50 by the year 2030, which is not too far from now. Knowing that, knowing what the risk factors are with young onset and really still paying attention to literature around that, we are always advocating to lower that age because it just means that more lives will get saved.

Brigid Bergin: We've been speaking with Angele Russell, senior director of partnerships and health equity from the Colorectal Cancer Alliance. They've set up a fund in the name of saxophonist James Casey who died on Monday at the age of 40. Thank you so much for joining me here on All Of It.

Angele Russell: Thank you for having me.

Brigid Bergin: Casey was on our show back in November. Here at All Of It, we took the news of his death with a heavy heart because he was such a joyful guest. He was very open about his illness, though it was clearly difficult for him to talk about. In the two years since his diagnosis, outside of being a member of the Trey Anastasio Band, he released solo music under his own name for the first time, including a Christmas EP called A Little Something For Everyone. The proceeds for that album were used to raise awareness about colon cancer and to fund screenings for those who are uninsured.

Casey was particularly vocal about the need for Black men to be screened since they are statistically at a higher risk of getting colon cancer than other groups. When he joined us in November of 2022 to talk about his Christmas album, he also performed a yet-to-be-released song, which is now out in the world in the form of a single called New Bloom. We'll hear that performance in just a bit, but we'll start with what he told Alison when she asked him why after a long and prolific music career, he decided to finally release music under his own name.

James Casey: People have a fear of success and fear of failure, whatever. I just never thought that I was good enough so I would always push it out. Maybe next year I'll be good enough. Maybe a year next I'll be good enough where I feel like I was good enough playing. Unfortunately with this particular situation with the health things, you learn pretty quickly that you can't push everything out. I had the opportunity. The people from the Nancy Langhorn Foundation reached out to me and asked if I would be willing to put together an EP and that I saw it as a really great opportunity to help people, but also for my own self to put something out into the world. Some music out.

Alison Stewart: Proceeds from the EP benefit the Colorectal Cancer Alliance, and Eastern Virginia Medical School's Hopes Clinic and goes towards providing cancer screenings. Of course, this is a cause that is very close to you. You learned that you had colon cancer in 2021. How long had you suspected something wasn't right?

James Casey: It wasn't very long, I'll be honest with you.

Alison Stewart: You're 38?

James Casey: I was 38 when I got diagnosed, I'm 39 right now. Excuse me. [laughs]

Alison Stewart: A lot of breath. Okay.

James Casey: A lot of breath.

[laughter]

Alison Stewart: You were really private about it for a long time, and then you decided that you would use your platform to try to help other people. What is it you want people to know about colon cancer? What is it you want people to think about maybe this holiday season when they're with their families?

James Casey: One, the main thing that I want everyone to know is that it's almost 100% preventable if you just get a colonoscopy. Unfortunately, the age for colonoscopies with insurance is 45 and they're trying to lower to 40 but I'm not 40. [laughs]

Alison Stewart: No, you were 38 at the time.

James Casey: I'm 38 at the time and unfortunately so was Chadwick Boseman. I'm letting people know that if you get checked early, you won't have to deal with it. That's my goal. I don't want anybody else to have to go through this. This is really, really, really messed up.

Alison Stewart: You've been going through chemotherapy while you're on tour. How have you been? Good days, bad days?

James Casey: Good days, bad days I got to say.

Alison Stewart: You've been promoting a hashtag, it's #TheyDidn'tSay.

James Casey: Yes.

Alison Stewart: Can you explain what that is?

James Casey: Well, I'm partnering with the Colorectal Cancer Alliance and they have a program called They Didn't Say. Now, the thing about colon cancer, at least in the Black community, is that it's hereditary. It hits us 20% more than anybody else. Once we get diagnosed, we have a 30% chance more of dying and it's really unfortunate. Had I known that I had cancer in my family, I would've gone to get checked before. The They Didn't Say campaign is basically a campaign to have you talk to your family. If there's cancer in your family please let the people know and your family so they can go get tested and they won't have to deal with this and that's basically it.

Alison Stewart: I'm going to leave it up to you. Love to hear you play again, but know you might be tired. How are you feeling?

James Casey: I can do a little bit more.

Alison Stewart: You're going to do a little bit more. You can even do like half the song if you want.

James Casey: Okay.

Alison Stewart: Okay, this is New Bloom, tell us what we're going to hear.

James Casey: We're going to hear New Bloom, I think it's apropos for right now.

Alison Stewart: Okay, once you get a little taste you dive out when you feel it. This is James Casey.

[MUSIC - James Casey: New Bloom]

Alison Stewart: James Casey on saxophone and on vocals. He also plays the drums too. I'm going to play His Eye On The Sparrow, a classic. What is it you love about the song?

James Casey: Okay, so this song, I put it on the record for my grandmother. My mom and my grandmother, they're both very religious, my grandmother just passed and so this was the tribute to her.

Alison Stewart: This is for your grandmother. The new EP A Little Something For Everyone. Remember the proceeds go to a good cause. Talk to your family, and get screened early for cancer. James Casey is so happy to see you. Thank you for coming in.

James Casey: Thank you so much for having me.

Alison Stewart: Here's His Eye On The Sparrow.

[MUSIC-James Casey: His Eye On The Sparrow]

Brigid Bergin: That was saxophonist James Casey's version of the gospel hymn His Eye On The Sparrow which included on his debut solo EP in honor of his late grandmother. He joined Alison on All Of It in November of last year. Casey died of colon cancer on Monday at the age of 40.

[MUSIC-James Casey: His Eye On The Sparrow]

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