Beyond the COVID pandemic that is sweeping the world, the US is also experiencing a wave of social upheaval about the unfair and inequitable treatment of Black men throughout history. As a white man, I am not always sure how to react and respond, but I’ve been taking a lot of time to do some of my own learning about this critical topic.
I wanted to see how it impacted health care. I reached out to fellow cancer advocate Bin Mclaurin, and he connected me with Freddie Muse, Jr. for a conversation about his story, how he feels that Black men are negatively and disproportionately impacted by health are, and how we can do better.
Back in 2007, Freddie was diagnosed with stage two prostate cancer.
While that was considered to be non-aggressive prostate cancer, he knew that “any form of prostate cancer will take you out of here, if it goes untreated.” After 42 radiation treatments, he was declared cancer free. Interestingly, he was also diagnosed with type two diabetes, high blood pressure, and high cholesterol around the same time, which are common comorbidities found in many Black men.
Ten years later, his PSA levels again began to rise. He has since undergone various scans, and everything has come back normal. However, he continues to be proactive. In his words, “if there’s cancer there, I need to get on it and put up the fight and knock it out just like I did the first time.”
About a year after his initial diagnosis in 2007, he started talking to men to find out what they knew about prostate cancer. To his surprise he found that “men are mostly uninformed. And that in itself is a tragedy – that men are dying from lack of knowledge.”
To combat this, he founded The Men’s Cancer Network in 2008. They have been able to sustain the organization by being consistent through community events, workshops, and whatever they can do to bring groups of men together. They want to make sure men are informed about the issues of prostate cancer and promote the screenings. Beyond preventative care, they also work to educate men on different treatment options, including surgery or radiation and to make sure that men understand their options. The goal is to “provide the information so that a man can make an informed decision on how to move forward.”
After learning about Freddie and The Men’s Cancer Network, we began discussing issues Black men face within health care.
As his first point, Freddie shared that he regularly hears from Black men who say “they wish they had known more or that they had not had the surgery that the doctor recommended.” Oftentimes, he finds that men think cutting the prostate out is all that needs to be done. He even had two men in his choir who had surgery, but the cancer recurred a few years later. However, since they were not aware of this recurrence, they ultimately passed away from cancer. A lack of information can lead to gaps in treatments or even death.
Beyond not always being provided full knowledge, sometimes Black men choose not to know and avoid going to the doctor. Freddie has had men tell him that “they don’t want to know if they have cancer or heart disease or whatever the health issue is.”
While this doesn’t make sense to him, he knows a lot of men in his community have this as their mentality. If a man is avoiding going to the doctor, he’s not even aware that he has an issue. In some cases, by the time he does, it’s massively aggressive, or even metastatic, “and at that point you may get a date, as opposed to a treatment option.”
Freddie posed a reason for this lack of knowledge or avoidance of information.
Simply put, he feels that “Black men have lost trust in the health system and don’t trust doctors.” He has personally experienced this “systematic injustice within the health are system.” To best illustrate this, he talked a little bit more about his recent rise in PSA levels in 2017 when he was referred to a urologist.
Without looking at Freddie in the face and only briefly reviewing the paperwork, the doctor determined that hormone treatment would be the course of action without any further testing or input from Freddie. Essentially, the doctor was trying to make the decision for him.
He was completely against that decision, so he got a second opinion from an oncologist. The oncologist took the time to listen to Freddie and did not agree that hormone treatment would have been the best treatment at the time because there was no verification of the underlying cause.
Freddie feels that Black men “just don’t seem to be treated the same as any other person that walks through the door.”
Traditionally, he’s found that instead of being “talked to” about issues, they’ve been “talked at.” Freddie has noticed that there seems to be a lack of connection with the doctor. They may not look into the Black man’s eyes or not ask if they have any questions before they move on. Many times, interactions appear to be the doctor saying, “I’m telling you this and there’s no response on your part. This is what we’re going to do, period,” as opposed to having an open conversation. This further compounds the lack of knowledge, because the doctors also don’t always take the time to explain things in a way their patients can understand, even if asked.
While Freddie did acknowledge that this could be due to doctors having little time for longer visits, I have personally never had a problem getting any of my doctors to take a few more minutes to explain something I don’t fully understand, even when I have run over my allotted time. To me, this is a clear example of my white privilege, which I had never even considered before.
While this is obviously a complex issue Freddie shared a few ways to begin improving health care for Black men.
First and foremost, men need to become more knowledgeable about their own health. Whether it’s through researching on the Internet or asking more targeted questions during doctor’s visits, Freddie says that men must “get more informed about their issues.”
He recommends having a written list of at least five questions prepared for your doctor. Write down (or record) the answers that you received from those questions. Later, the guy can reflect on the question and research the doctor’s answer to make a better informed decision as to how to proceed.
Secondly, Freddie’s opinion is that taking care of health should be a family affair. According to him, family is a huge motivator in the Black community. When a man said to him that he didn’t want to know about his health, he had the following to say:
"It’s not all about you. Your family is affected. You have kids. Don’t you want to see your baby girl graduate from high school and college, maybe get married? Do you want to walk her down the aisle?
What about your son? Don’t you want to see him perhaps make the NFL or the NBA? What about your wife? Did you have a conversation with your wife? Did you speak with her about your issue and what you should do?”
Family can be a powerful motivator in charging men to take a more proactive role in their health.
Finally, while it’s hard to engage men in conversation about their health, Freddie said that he’s found that a direct approach can help. There have been times at the health fair where men are not coming to his table. He steps away from the table, grabs some flyers, walks around, and passes them out, saying “Hey, my brother. Here’s some information about men’s health."
As we neared the end of our discussion, Freddie shared powerful words.: “Health is our greatest wealth.”
In his words:
"No one, not even your doctor, should know your body better than you. Guys are not paying attention to the body. Things are happening and men refer to it as, ‘I’m getting older, so maybe that’s why.’ Well, that may not be why they may actually be an issue.
Don’t be afraid to get to a doctor’s office. Men will seek a doctor and/or treatment only when something happens to them, or someone close to them has been diagnosed. The key to all of this is early detection-awareness, prevention, and screenings.”
Supporting Black men in their health is a lifelong mission for Freddie. Even though it’s sometimes an uphill battle, he closed out by saying, “I’m consistent. I’ll be there. I’ll be there regardless.”
This post originally appeared on A Ballsy Sense of Tumor on June 29, 2020. It is republished with permission.