A White Privileged Female Advocate

In the World of Prostate Cancer

by Jan Manarite, Cancer ABCs (Nov 2020)

I am Caucasian, of European descent, with white privilege, even though I didn’t know this until my adult life. It’s not something I chose – it’s something I was born with.

Oxford defines white privilege as “inherent advantages possessed by a white person on the basis of their race”. I also never chose the world of prostate cancer, nor did I choose to be an advocate in my mind. Themworld of prostate cancer chose me, and my family when my husband was diagnosed with a PSA of 7,096 at age 58, with bone mets almost everywhere, including his skull.

That was March 2000. Our son was 9 years old. I advocated for my husband and his treatments extensively. He lived for 13 years.

And advocacy? I didn’t choose this either. What I discovered is that I was always an advocate – I just didn’t realize it until metastatic prostate cancer affected my family. I discovered that I am drawn to important, key issues and problems. I feel compelled to be part of the solution, and help create solutions. I learned that I am able to let go of “the little stuff” in order to pursue “the big stuff”, such as unmet needs, and major issues that cause pain to other people. I am driven internally to all of these things. I’m not simply doing advocacy – I consider myself an advocate at heart.

But I choose advocacy now. And I choose it in context of the need for more diversity in research, cancer care, and support, especially for black men and their families. As we know, African American and black men are at higher risk for prostate cancer, aggressive prostate cancer, and dying from prostate cancer.

I’ve given this some thought – here’s my commitment to advocate for this issue as a white women of privilege.

Listen more. Listen longer.

This is always an essential part of advocating for someone else. If you don’t listen, you will be unable to meet them where they are, and eventually this can evolve into hoping the people you are trying to serve meet you where you are at. That never works.

Follow first. Lead second.

I think it’s important to let the African American and black community lead us as we proceed, for they truly understand the issues and the people. I think we will need to do some thoughtful following before we lead.

Commit to Long-term Learning. Teach when appropriate.

Healing always takes longer than creating pain or damage. Learning will be part of the healing. I think we will need to have a perspective or long-term learning, which is critical for building trust and relationships needed for meaningful change.

Use words thoughtfully – create new phrases. I recently created a PARP Inhibitor Comparison Table for patients and caregivers in prostate cancer, since this is a new area of treatment for this disease. In the table, I added a row specifically for data from the PROfound Trial and the TRITON2 for minorities, including black men, African American men, and men of Asian descent. What it revealed was that the PROfound Trial had 1% Black men enrolled in their trial. The TRITON2 Trial had 7% Black or African American men in their trial (with 21% of unknown race). I then began to use the phrase “Caucasian data” as I talked to other advocates, as I think it may help create awareness for this issue of needing more information and data for black men with prostate cancer. The phrase “Caucasian data” is alarming at first – but mostly because it’s true. But this alarm has the potential to create necessary awareness in a truthful, albeit uncomfortable way.

Ask great questions.

Here’s my first one - What have we tried before (regarding acquiring prostate

cancer data for black men) that has failed? Perhaps we all have a list in our minds. The process of elimination is essential for true progress. There’s a reason why we have a phrase that states “Don’t re-invent the wheel”. It’s because sometimes we do. Let’s not.

So, these are my thoughts this November 2020, and this is my commitment to being part of the solution for the problem of not having enough black men involved in clinical trials and studies, so we can have the data we need to help their prostate cancer in a more meaningful way.