“Understanding and taking action against racial differences in cancer care and clinical trial participation are made more powerful when we listen to patient voices,” writes one patient with breast cancer.
I’ve been asked a lot of times about how cancer has changed me. I usually answer that I’m the same person. I haven’t become kinder, smarter, more patient or more accepting. There are people who could convincingly argue just the opposite has occurred.
Still, in one way, cancer has been a catalyst for me. Living with cancer has brought a huge variety of people into my life and it has put me in situations far removed from my pre-cancer world. For instance, without cancer, I’d never see up-close the reality of Black women and men with breast cancer left out of important conversations.
I live with the memory of an afternoon just last year during a cancer webinar when the presenter remarked that the scientists at Tuskegee during the infamous syphilis studies (1932-1972) probably didn’t intend harm, or something to that effect. I know I took a sharp breath at the comment and can still feel my heart racing, but I didn’t say anything. On screen, I looked at the other people attending. Several were Black, and among them were people I knew personally and admired.
It didn’t occur to me to say something in that moment. I don’t like to admit that. The presenter had moved on. But one person did say something a few minutes later, pulling the conversation back to the Tuskegee comment. That person, who was Black, also lived with metastatic breast cancer and would die from it just months later.
I forget a lot, but I hope I never forget hearing Chawnte’s voice as she explained how wrong that statement had been and why it mattered. I still regret staying silent. Race and racism are hard to talk about. It’s hard to know how to do it “right” and for sure I’ve made – and will continue to make – a lot of mistakes.
Around the same time, I started to help the Metastatic Breast Cancer Alliance with a project called Black Experience of Clinical Trials and Opportunities for Meaningful Engagement (BECOME) brought to them by Stephanie Walker, a retired pediatric trauma and hospice nurse living with metastatic breast cancer. Stephanie had been asked by the late Marina Kaplan, who was also a metastatic breast cancer advocate, to survey Black women and men with metastatic breast cancer about clinical trials.
The statistics on the topic stopped me in my tracks. Clinical trials provide hope and better treatments, but Black people are left out through non-participation. Stephanie wants to find out why that is, but also outline actions that industry, researchers and support organizations can take now to increase the clinical trial participation of Black people with metastatic breast cancer.
Without my own diagnosis, I wouldn’t have known about the racial disparity in cancer treatment and outcomes. When it comes to breast cancer, Black women are diagnosed at a younger age than white women, are 40% more likely to die, far more likely to have triple negative breast cancer (TNBC) which lacks targeted therapies and can face socioeconomic factors that make getting good care more difficult.
I didn’t know until last year that Black women with highly targetable HER2+ breast cancer were 25% less likely, according to a 2016 review of 2010-2011 data, to have received Herceptin (trastuzumab) than white women when adjusted for other factors.
In the case of TNBC, a study came out in May 2021 that evaluated racial and ethnic differences in treatment and outcomes of over 23,000 women with TNBC. The authors, from the Washington University School of Medicine, stated the findings with appropriate bluntness. “In this retrospective cohort study, African American women with nonmetastatic TNBC had a significantly higher risk of breast cancer mortality compared with their white counterparts, which was partially explained by their disparities in receipt of surgery and chemotherapy,” they wrote.
In other words, African American women were not getting the same treatment as white women.
These are the facts about Black women and men with breast cancer. They’re why we need to see the racism in cancer care and why clinical trial enrollment needs greater diversity and representation. I think Stephanie’s survey will lead to solutions. Patient-led research for patient-centered answers can make a difference.
I would never have expected myself to be an ally in the drive to change this picture. But, here too, I listen for Chawnte’s voice not backing down, I pay attention to Stephanie and the Black patients driving BECOME, and I’m learning to be there in any way possible. Things don’t change unless we stand up, unless we say, “This is not okay,” and force a better future.
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