By: Rashida Ashley
The facts are the facts. It doesn’t feel good to keep a secret. And it doesn’t feel good to hold on to feelings of anxiousness or uncertainty. As women, we commune together often to talk openly about the pressing, and not so pressing aspects of our lives. We talk about work, our families, our personal relationships, our dreams, businesses, what happened on last night’s episode of Empire, etc. However, it has come to my attention that there is a particular conversation that isn’t happening within the space of our group chats, and quite frankly our community as a whole. The issue on the table that has always been present but unfortunately unnoticed is the concerning issue of prostate cancer.
Prostate cancer is astonishingly the second-leading cause of cancer death in men overall. As one ‘zeros’ in on the problem, black men are 1.8 times more likely to be diagnosed with prostate cancer and 2.2 times more likely to die from this disease as opposed to white men. With an issue so prevalent in our community, it begs a few questions. Why isn’t this topic a part of a regular discussion at our dinner tables? Why is this issue so prevalent in our particular community? What can we do to see these numbers go down to, well, zero?
After having the honor of speaking with prostate cancer survivor and mentor Mical J. Roy, VP of Health Equity at the 501(c)(3) non-profit Zero, Dr. Reggie Tucker-Seeley, and fashion designer Fredrick Anderson these inquires not only found refuge from uncertainty, but found educators, leaders, creators, and organizations such as Zero-The End of Prostate Cancer who are driven to ensure that this conversation has a safe and secure space to be up for discussion for everyone, particularly men, on a national level. This is a discussion where we can fight prostate cancer so that we may further ensure and acquire a safe and relevant space for men to not only convene to speak on these matters, but to celebrate themselves. The sixth annual Blue Jacket Fashion show, sponsored by Janssen Oncology-who matched donations made to Zero-The End of Prostate Cancer, commenced on February 17th to stir the grounds for this conversation.
Leading up to the event, we chatted with a few important voices for the cause. First, Mical J. Roy is an educator, father, and husband based in Austin Texas. At the age of 37 in November 2018, he was diagnosed with stage one prostate cancer during a routine check-up with his primary care physician where his PSA levels were tested. In June 2019 Roy underwent a successful prostatectomy and now feels better than ever. A while later, he discovered that his uncle was diagnosed with prostate cancer 5 years prior. This discovery made him realize the persistent issue of health within the black community – of not being open to being informed on matters concerning health and health history which stems from feelings of fear, mistrust, or ignorance. As soon as he learned about the serious matter of death rates within the black community concerning prostate cancer, Roy became motivated to advocate for the prostate cancer community by partnering with Zero – The End of Prostate Cancer. He sparks up the conversation as he advocates for raising awareness of the disease, sharing his story, debunking the common misconceptions of the process, and strongly encouraging other black men to get screened annually.
Q&A: Mical J. Roy – Prostate Cancer Survivor and Mentor
What part of your comfort zone have you had to leave behind following June of 2019 when you underwent a radical prostatectomy after your diagnosis of prostate cancer? How has this changed you for the better?
I’m laughing already because whenever I tell people this, they are always so surprised to hear that I am an introvert. If I had the option, I would just choose to chill out and not talk. I’m completely fine with not talking. However, in this space I never pass up the chance to talk about it and share my story because I am so passionate about it; first, because I lived through it. And second, because I know someone needs to hear it. I move past that introverted personality to share my story, and once I’m done sharing, I go back to being quiet.
As someone who has had the privilege of lending an ear to men who are concerned about their health, what is the biggest concern you’ve found in your experience that men have regarding prostate cancer screenings and new treatment options?
The biggest concern that I’ve found is honestly the procedure, such as how would they go about finding out what their PSA is. A lot of men think that it is an invasive procedure where someone would use their finger. It might seem kind of minute, but I think many times they just think that there’s a more antiquated way of going about discovering what their PSA is. I have to educate them that today, it’s actually a blood test. Only if the blood test is showing something concerning would they go to that next step. 98% of the time men are surprised to find that out. I always try to share that in my message too. Please go to the doctor and get your PSA test so you can have a baseline. It’s not that I’m trying to get you to the doctor to find out you have cancer. Obviously, if you go and that happens, it is a blessing that you caught it when you did. However, more than anything my message is meant to encourage you to visit a doctor routinely and get a baseline. For example, if I go to the doctor tomorrow and my PSA is 0.4, I know when I return six months later, it shouldn’t be any higher than that. If it is, then that’s alarming.
Being that you are a mentor, what are some of the biggest things/lessons you’ve taken with you as you play a monumental role in newly diagnosed patients’ health journeys?
I think the biggest lesson that I can take from mentoring all over the place and being a man myself, is that sometimes men just need someone to listen. They don’t always necessarily need someone to offer any advice or any tips. Sometimes they need to just say what’s on their mind. They just need somewhere to place that fear and that stress and/or just someone to simply be an ear. That’s what I’ve realized in mentoring men all over the country, from all different walks of life. All these men have recently been diagnosed with prostate cancer. A lot of times they just want me to sit on the phone and just listen to them. Of course, they have inquiries and questions but in general, they just want to process what’s in their head. They just want to process that out loud. If you’re really close to someone who gets diagnosed with prostate cancer, just know that the best thing you can do is lead with love and be a listening ear to that man.
Are there any mental health exercises that you have advised your mentees to take for their personal journeys through ZERO to overcome the feeling associated with their diagnosis?
I don’t necessarily call it mental health. I usually advise them to take a walk or go running. Exercise and getting your body moving always helps you to process things a little bit better. I’ve also suggested various podcasts to them, and I love music, which helps me. So, I might suggest different songs. Most of the men I mentor are usually African American. That helps the bond a lot better too, honestly. I can share music with them or share different things that I might not culturally be able to share with someone else.
In what ways have your experience as an educator impacted your role as a community and public leader?
I’ve never thought about the intersection between the two. As an educator, you have to know how to talk and how to relate to people. You have to know how to assimilate with different people and no matter who’s in the room, you have to know how to engage them. Without me really knowing, I think that those skills have served me well in advocating, trying to spread the message, and making people more aware of what prostate cancer really is and how many more black men it affects than any other man. If I’m honest, I don’t necessarily look like what most people expect when they think about a prostate cancer patient. I think that has worked well because it might pull people in more when they see a younger person. It helps to spread the truth that prostate cancer does affect younger men. It’s not always older men with gray hair. I met a young man who was fourteen years of age and had the disease since he was eight. It’s a real thing. So, I believe my experience in education has certainly served me well in how I can convey the message and the intentionality behind it.
Another person who has used their experience as a community leader to impact change for our society is Dr. Reggie Tucker-Seeley. Well-versed in cancer research, public health, and health disparities research, Dr Tucker-Seeley has joined Zero as the highest possible candidate for Vice President of Health Equity. His position allows him to drive solutions in matters regarding racial and ethnic disparities so that prevention, survivorship, and end-of-life care can be more prominent for the community.
Q&A: Reggie Tucker-Seeley – VP of Health Equity, Zero
What were a few of the racial/ethnic disparities that played a significant factor in the prevention of greater access to high-quality healthcare that you’ve seen in your research/practice before the outbreak of the Covid-19 pandemic?
My research focused on the impact of financial hardship, on health and how individuals navigated healthcare. In the cancer space, this is called financial toxicity, a notion that accessing or navigating cancer care can be financially toxic to the household. One of the things that my research uncovered was that this phenomenon is experienced in three ways. The first impact is whether or not you have access to financial resources to navigate the healthcare system. Another impact is the inability to work if you’re the patient or the caregiver. Then it’s this sense of the psychological notion of financial stress and worry, that comes around. This often happens due to a person not having the financial resources to meet their expenses because of navigating cancer care. The final impact is the financial adjustments that you might have to make. You have to balance paying other bills to pay for the medicine. So, when we talk about financial toxicity, it’s important that we think about all three of these aspects because the intervention that is developed must impact all three areas to really reduce the financial toxicity that families experience as they navigate cancer care.
How have these racial/ethnic disparities changed since the beginning of the pandemic to this point?
One of the things that the pandemic uncovered was the substantial disparities across racial and ethnic groups in terms of who has access to financial resources, who has access to good quality health care, and who could adhere to the protections that were set forth by the government. One of the things that was quite telling for those of us who are disparities researchers, was that none of the disparities described were surprising.
What is the biggest step we, as a community, can take in closing these disparities through time?
When it comes to prostate cancer, oftentimes we tell men to get screened. But it’s important that we not only tell men to get screened, we also must talk about what it takes to get screened and also what happens after they get screened. It’s important that men have a usual source of health care with a health care provider they trust and can have an open and honest conversation with so that person can help them coordinate their care after the screening. It’s not just about getting screened. It’s about being able to navigate between primary care and specialty care. We want to make sure that men can navigate healthcare with a trusted provider and a well-coordinated system. So, we at Zero have some programs that provide case management to men as they are navigating care that helps to reduce the financial hardship. We also have a mentoring program for men who have already navigated prostate cancer care so that they can help men that have been newly diagnosed. So, it’s important that we provide those wraparound resources that help to protect folks as they’re navigating the healthcare delivery system.
What steps can our leaders in public health take that can bring an impactful change to these issues?
Well, I think one of the things we also saw during the pandemic is that sometimes we just didn’t have the data we needed to report it across racial and ethnic groups. So, it’s important that we have great data that reports the race and ethnicity of patients as they’re navigating the healthcare delivery system and our public health systems so that we can report on the differences across racial and ethnic groups. Having that data is important. Another step is getting care to people when and where they need it. Expecting people who have very busy lives, who are managing multiple priorities, to leave their community to get care in another part of town I think is also quite challenging. Also, I think our leaders can work on diversifying our workforce. It’s important that we see people who look like us providing care to us. People who know what life is like in our respective communities, preferably people who come from our communities. Getting people the right care at the right time is important, but also we’re ensuring that our workforce reflects the community in which that care is provided.
You have decades of experience in cancer, public health, and health disparities research. If/when these issues are resolved, what kind of influence will these changes have on our nation as a whole?
The American Cancer Society put out their annual facts and figures around cancer. There was a statement in their report that really caused me to pause and that was that black Americans have the highest cancer mortality rate of any group. I was curious about how long that had been. So, I went back, and we looked at every single report for almost the past 20 years. It’s the same language. I am so glad that we’re talking about these issues so much more. We’re talking about the disparities, not only issues related to access to care, but issues like racism that patients may encounter as they’re navigating the healthcare delivery system. We’re talking about all those things, which I think is really important, but I think it’s also important that we have action and interventions that address these differences. Now, I don’t want to downplay the fact that cancer incidence rates are down and that disparities have been reduced; but they haven’t been eliminated. What we’re working towards is this notion of health equity. We must view health equity as a goal and we have to be explicit about what is it that we’re trying to reduce because everyone has a fair and just opportunity to be as healthy as they can.
What is the best way for an individual to get involved to generate greater access to high-quality healthcare, support in navigating the care process, and improve prostate cancer outcomes?
One way is volunteering at organizations such as ours. We at Zero are always looking for volunteers, especially for men who have navigated the prostate cancer journey to help other men and their families who are navigating their prostate cancer journeys. I think one of the things that many of us don’t really understand is how to navigate the healthcare delivery system. We don’t understand our health insurance until we need it. Oftentimes it’s at that point that we realize we don’t have enough of it. Or we don’t have the things that we need to keep our families whole as they are navigating healthcare delivery, so understanding as much of that process as early as possible is always helpful. On the healthcare delivery side, I think physicians or healthcare providers need to be more patient-focused. Also, the healthcare delivery system should be more patient-centered, by structuring things around getting people the care they need when they need it, where they need it.
It’s safe to say the biggest way to become involved and show support is to talk about it! We as a community are equipped to have educators, mentors, and public leaders to not only lend a supportive ear, but to also break down the various aspects involving prostate cancer and how to find assistance. We are also fortunate enough to have creators who can provide a space to not only talk but to also celebrate ourselves with others. Frederick Anderson is such a creator. On February 17th he hosted the sixth annual Blue Jacket Fashion Show at Moonlight Studios. This event consisted of actors, influencers, and other leaders in entertainment who embraced the runway to raise awareness on matters concerning prostate cancer while also changing perceptions regarding the tradition of the blue jacket. As a first-time fashion show attendee, one could feel not only the excitement but also the energy of camaraderie among the models, designers, and guests from the start of the event to the very end.
Q&A: The Blue Jacket Fashion Show Founder, Frederick Anderson
What inspired you to start The Blue Jacket Runway Show?
Laura Miller and I were asked to work on the project, to come up with a concept. There are lots of interesting ideas within the fashion industry for women and charity events. I think it’s important to always have something outside of ourselves that we spend time thinking about. These kinds of charitable events where we can talk about ideas that embrace other people, I think it’s very important to our psyche and it’s also important to the fashion industry. Embracing a bigger idea and bringing yourself into a bigger message is not always just talking about yourself. It’s nice to take a second and think about something in a bigger context because I think it makes us better people.
Thinking about this, I also was in my late 40s and was thinking about when I’d gone for my first colonoscopy and all of that. I thought to look up men’s health concerns, but at the time on Google there was nothing, no forums or anything to talk about men’s health. It’s actually the oddest thing in the world. If you Google women, cancer, and breast cancer, there’s just a prolific amount of information out there. To me, it was kind of an obvious thing that men don’t like to talk about their health. Even greater than that, if men do get into a situation where they needed to talk about their health, there is nowhere to go. I mean, it was really shocking.
There are only a few organizations that exist like Zero Cancer, which is amazing, and the Prostate Cancer Foundation, which I worked with last year. Zero Cancer is so global, and the way that they approached it this year made it such a great pleasure to work with them because they get it. It’s younger, it’s cooler, they’re much more laid back in the way they carry the conversation. It makes people feel comfortable. The biggest thing when you talk about the scare of cancer is for everyone. The idea is that, especially in prostate cancer, it’s one in seven for minorities, I mean, that’s craziness! So, it’s going to affect you in some way. Even if it’s not you personally, you’re going to have someone either in your family or close friends that it’s going to affect. For me, it’s been several close friends.
The more I talk about it, the more people come forward. Every year two or three new guys that I know come up to me as they start getting older, who are just having to deal with it. They thank me saying, “Oh my god, it made me think that it’s okay and that it’s not a death sentence or something.” It’s not entirely known that most people can be cured with an easy treatment, you know? So, if they know about it, I think it’s just conversation; conversations are good. A lot of times, especially in the fashion industry, we’re so visual that we forget we do need to have conversations. It was nice to have a reason for guys to get together and talk about something very important, I think it’s amazing.
There are so many layers as to why you start something, it’s not generally just one idea. Even though it started as a project for one idea, Laura and I took it upon ourselves because we decided that it was actually a very big project. It was something that needed to be moved forward and so we moved it forward on our own, which was kind of amazing. It’s been a long process, but now it’s a stable, kind of yearly idea. I have guys calling me all year round, even celebrities. I’ve been very blessed and have met so many great people. Don Lemon is a good friend, Mario’s a good friend and Billy Porter, we were on Broadway together before I was a designer. A lot of these people who are in the show are very close friends of mine that I’ve kind of accumulated over all these years.
That’s part of the feeling that you get [at the show], I know almost everyone on that runway. It’s fun, you know and it’s great to embrace all their successes! My dear friend Musa Jackson who just started Ambassador Magazine in Harlem (which I think is just kicking butt), I love that he did it. It was great to have him come and join the fun and do the runway. I just think it’s really great and I like bringing these guys together to also celebrate them because they’re amazing and have done amazing things. I like to lift them up and give them a showcase to talk about these issues because all of them are affected by it. All of them think profoundly about it, but we just don’t have an open forum and now we do.
How have you seen a difference in the conversations among men regarding health?
You can see them posting and sharing pictures of each other backstage and talking about how this one inspires them and that one inspires them. Some people met their heroes backstage. I think that’s kind of amazing and fun, it’s a great experience. It is important to have these kinds of moments where we celebrate together. They celebrate their successes, but they also are there to try to lift other people, help other people and spread the message, which is ultimately the goal of success. For me, this is why I was given the ability and the successes that I have; to be able to use them to speak in a bigger way. I’m always thinking that way. I’ve been very blessed to have a big platform and to have relationships with all these incredibly talented, gifted and successful men, to bring them all together. It’s kind of amazing.
In the long run, what is your hope for the future of this fashion show?
Well, it’s interesting, it’s slowly happening, I think. Laura and I talked about it becoming a year-round idea. I’m not sure but I do think that it can expand out to different areas. I don’t understand why Blue Jacket couldn’t be a golf tournament or something else. There are other ways that men can speak to each other. I see the future of it becoming summits and opportunities for men to get together and embrace. We’ve been talking about doing something in Harlem, so hopefully, I’m going to work on that. Perhaps go into neighborhoods of color since obviously, men of color are affected much more because of so many disparities. I’d like to be able to do some sort of event like a fellowship night or something like The Blue Jacket, where there are cocktails, etc. I think that would be interesting. Just to take the message to another level.
As you and your team prepared for the show, what kind of atmosphere did you intend to create for the collection?
Honestly, what I like is for the guys to celebrate their own personalities. The reason we bring all these wonderful men together is because we want them to give us the best of themselves. It’s not really about a specific idea. It’s about celebrating this kind of joint effort and this feeling that together; they can make a difference. It’s about these guys standing up and saying that we’re not afraid to talk about prostate health and men’s health in general, which most men are. Almost everyone was jumping in and talking more than I’ve ever heard guys talk about it. Their fear of getting tested and things like that. That comes across in the show and backstage. It’s just a great atmosphere.
What was most important for you as your models carried themselves through the runway?
It’s really about showing your individuality and embracing the kind of joy in being yourself. I mean, I love the idea that several of the designers went really far and came up with some interesting ideas that elevated the personality of each of the people. That to me was very fun to see.
What was special and purposeful about the fabrics and style of the jackets showcased?
It’s interesting. We started off with the traditional idea of the blazer. Obviously, the first thing that guys always get when they graduate is a blue blazer. That kind of becomes our uniform or it used to be the uniform even though that is changing a lot now. So, the idea for the show was as if the blazer is a traditional uniform, but how can we get men to embrace it and bring it forward in an individual concept to showcase their individuality and their new idea of how the blue blazer has evolved? Just like the way that men have evolved. We do that as well when we talk about prostate cancer, and we talk about cancer in general. How would we talk about it now because men never talked about it? In the same way that we’re deconstructing and trying to think of new ways to present the jacket is the same way we’re trying to think of new ways to talk about men’s health and prostate cancer.
With all of the important things and people who have been lost during this time, how has embracing this loss played a part in this movement, show, the continuous molding of the fashion industry, and your creativity?
I think we’re affected forever. Right now, we’re all trying to get what it’s going to be like now that we’re coming back. You can’t negate the idea that everyone was sitting at home for two years. This wasn’t a few months. This was two years that people were sitting at home having to deal with their own kind of demons in their own homes. Separated from a commonality of energy of going out to participate in the world. We were separated from our family, our friends. That will profoundly change everyone, forever. Some people more than others, and I think it’s just the beginning of understanding how that affects us.
So, the first step is to get moving again, which is what we’re all doing. Therefore, it was important that fashion week came back, and people were doing live shows and then we did a live show again because we have to start with some sort of normality. On top of that, that’s why this year we talked a lot about mental health, because it’s really important, especially after COVID and all these things. To think so many of your friends and acquaintances passed away and we’re just dealing with it. Like it’s normal now. This is just odd because that is a new thing that we see people in our groups commenting in such large numbers. Before we always thought that it was more about the elderly or the extremely sick. We saw a lot of people in such large numbers who are no longer here to deal with that loss in real-time, is just kind of amazing.
I don’t think we’ve even touched the tip of that iceberg yet of how that affects us all. I’ve had so many friends who’ve just literally changed their life significantly and moved to other countries or decided to just take lower-paying jobs and live a different lifestyle. There are just so many things that have happened because of what these two years have taught us, and what people take away from it.