Who knew it was nothing new: Racial disparities in healthcare
Society puts a big emphasis on “trending.” Trending is defined as emerging as a popular fad; something widely mentioned or discussed on the internet. Many people dream of the chance to have their words, videos, and their name trending. I feel that race and racial atrocities became a trend during the pandemic, even to the extent that “health disparities” became a “thing.” There were headlines on every national news broadcast, social media, magazines, newspapers, scholarly journals; all forms of media covered a similar topic: “Racial disparities in health care: A matter of life and death,” “Understanding and Addressing Racial Disparities in Health,” and “Conceptualizing Racial Disparities in Health.” Suddenly, people realized that we Black people are discriminated against in every facet of our lives, including our healthcare. People are only starting to learn that we face the opportunity for racism whenever we must interact with someone who is of the majority in the United States.
News articles from the year 2000 prove we are continuing the exact same conversation. Is any of the breaking news about health disparities shocking to anyone? More specifically, to those marginalized groups who have been consistently ignored, forgotten, or overlooked - is this even news? I can put together a group of people who represent various minorities, and they all will share countless stories of discrimination, inequities, lack of representation, or felt that their voices did not matter.
I was one of those voices.
In December 2018 while getting dressed for a holiday party, I found a lump on my left breast. In January 2019 it was confirmed that I had breast cancer. After multiple tests, scans, and biopsies, I learned I had an aggressive stage III invasive ductal carcinoma ER/PR+ HER2- breast cancer. My treatment included a lumpectomy, port placement, ATC chemotherapy, radiation, and physical therapy for chemotherapy induced lymphedema. My breast cancer team included 11 people, which consisted of seven women and three of them were people of color.
During radiation, I began to burn badly after 28 sessions. I asked one of the radiation technicians in the facility that day if he could give me a cream or anything for the excruciating pain. He said, “No. You’ll be alright.” With tears in my eyes, I demanded to speak to my radiation oncologist. When she walked in and saw I was holding back tears, she immediately asked what was wrong. I explained that I had been in agonizing pain since my previous session. I added that I quit radiation. She asked if I had been putting Silvadene cream on it. At that point tears began to flow from my eyes, and I could only shake my head no. I told her that I had never received the cream. She explained that she had told that radiation technician to give it to me when I had my consultation - before I even began my radiation treatment. Ironically, the radiation technician that she was referring to was the very one assigned to my radiation that day. I shared with her the conversation that I just had with him. She opened the door and asked for a nurse to come clean my wounds and put the cream on it. She then went outside the door and asked for the technician so that she could determine why I had experienced such an interaction with him. She continued to speak with him on the other side of the door. She returned to the room to check in on me and to let me know that what I experienced with him would not happen again. She felt it was best that I did not continue my care on that day. I returned the following day to continue my radiation sessions.
I felt heard. I felt seen. I mattered in that moment. At that point in my breast cancer journey, she was the first African American doctor and only the second African American person on my cancer team at that point. Representation matters.
While the health care that I experienced was overall exceptional, I did notice that every time I was in a waiting room or oncology infusion center, just how few members of the staff looked like me. Representation means so much because it is important to see people who look, act, and experience life in the same manner as I do. It truly reflects inclusion and diversity, which gives hope in a world where there is so little for an African American woman. I learned that having someone on my team who looks like me could alter my experience. I then knew that I had to advocate for representation on my team. The next doctor that I added to my team was an African American physical therapist who was also a breast cancer survivor.
Currently, fewer than three percent of all medical oncologists in the United States are African American. As my radiation experience shows, my African American doctor made a powerful difference at a point in my care when I was ready to give up. Breast cancer is traumatic in so many ways; racism and racial inequities multiply the hardship exponentially and worsen outcomes. I need to know that there are members of my team who are ready, like my doctor did, to have a really challenging conversation and do the hard work of rooting out racist treatment in healthcare. We need more African American oncologists.
The inequities of people of color cannot be a temporary fad. There must be a true commitment to enact change. All the atrocities that occurred during the pandemic put a magnifying glass on health care; yet this has been and continues to be the experience of millions. There have been some positive changes, but there is so much more to be done. My hope is that racial disparities will end, and moral outrage will no longer be something people do to be trendy, but that true equality will prevail.
Keneene Lewis is a Support Services Coordinator with Living Beyond Breast Cancer. She is a divorced single mother of one, Kalista. She was diagnosed with stage III invasive ductal carcinoma ER/PR+ HER2- in January 2019 and she is currently NED. Keneene is a proud Baddie Ambassador with For the Breast of Us and focused on using her voice to speak for those who are unable to speak. It has become her mission to bring awareness to health disparities and biases that black women and women who represent the global majority face once diagnosed with breast cancer.