As Beth Jones soldiered through months of radiation and chemotherapy for colon cancer, she watched other patients finish their treatment and ring a bell to celebrate. She longed for the day that she too would ring that bell with her family by her side.
So imagine how it felt when her final treatment day arrived and she was told by the head nurse that [ceremonies] weren’t happening—and what’s more, they didn’t even have a bell to ring. “I endured six and a half weeks of radiation and six weeks of chemo, to end it all without ringing the bell,” she recalls. “What made me feel worse was that the week before, I expressed that I was so excited to get my turn.”
Jones is grateful for her treatment and that she had the insurance that allowed her to get quality care, but she fears the lack of a celebration was no mere misunderstanding. “I never like to pull the race card and I try to find other reasons,” she says. “But I will point out that everyone who was ringing the bell was white.”
She felt her suspicions were confirmed when she began receiving calls and messages from other nurses and techs, who were apologetic, but were afraid to challenge the head nurse. Though Jones’ cancer treatment itself was not compromised, the disappointment she faced at the end of it hints at the many ways Black patients can experience care differently from white ones.
Cancer hits all communities hard, but there are systemic issues in the health care system that can negatively affect the outcome for Black patients in particular. These problems go beyond cancer care, but it’s crucial to look at them in the context of the nation’s #2 killer: Fair treatment can only start to happen when we understand the specifics of the problem.
Where the system fails Black people
There are three main areas that illustrate how racism infiltrates cancer care.
Assumptions about Black patients
In the middle of June 2018, Garlin Russell (no relation to the author) fainted and was rushed to the hospital. On the way, EMTs gave him Narcan, a nasal spray used to reverse drug overdose, which his family was told revived him. There was one problem: Russell was not an addict and had no evidence of drugs in his system, according to his sister Denise Dozier. But he was a Black man and a resident of Camden, New Jersey, an area overrun with an opioid crisis. Dozier believes the EMTs and hospital staff assumed he was another drug addict.
Russell did not have a problem with drugs—but he did turn out to have stage 4 prostate cancer. It afflicted his father and uncles and is more predominant among Black men than men of other backgrounds. But even after another hospital visit in July, Russell didn’t start chemotherapy until the following January. Dozier isn’t sure why that was, but it was too late: He died two weeks after his first treatment. “We were so angry that he was released from the hospital, and his symptoms and family history pointed to cancer,” Dozier says.
Dozier feels that implicit bias—the unconscious beliefs and stereotypes that we carry with us about certain groups of people—prevented her brother from getting timely care. For most cancers, studies show that a delay of just four weeks can be detrimental to a patient’s chance of survival.
Russell’s story is just one example of what can happen when health care providers make assumptions based on myths about Black patients. One 2016 study surveyed 222 white doctors and found half of them believed that Black people do not feel as much pain as white people. Those doctors also “made less accurate treatment recommendations.”
This may have been the case for Black comedian Wanda Sykes, who said during a Netflix special that she was given a prescription for ibuprofen after her double mastectomy, even though many cancer surgeries require opioids and extensive pain management programs. Sykes had stage zero breast cancer and was able to treat it early, but breast cancer is more likely to kill Black women, despite being more prevalent among white women.
A lack of research on Black patients
Without inclusive studies, it’s hard to know how conditions and potential treatments affect different populations, explains Khayriyyah Chandler, D.O., a New Jersey-based family and lifestyle medicine physician. While there are efforts being made to study people of varying backgrounds, it’s important for doctors and researchers to actively recruit Black study participants.
When there is more diversity in clinical studies, we may have a better understanding of who exactly is at risk for certain conditions and what’s causing disparities in their outcomes.
“Take, for instance, risk factors for common cancers like breast and colon cancer—inactivity, poor diet, smoking, and alcohol use,” explains Dr. Chandler, who is Black. “Even though some recent data points to less consumption of tobacco and alcohol by Black women, they often die more of these cancers.” With more research participation, studies may point to potentially unique risk factors for Black women developing certain cancers and why they die of them at higher rates.
Unequal access to care
“Affordable, excellent cancer care is not consistently accessible to low income and Black populations,” says Dr. Chandler. Cervical cancer, for instance, is “overwhelmingly preventable with regular pap smears and HPV testing,” according to Dr. Chandler. Unfortunately, research shows 9 in 100,000 Hispanic women and 8 in 100,000 Black women are diagnosed with cervical cancer compared to 7 white women and 6 American Indian/Alaska Native women—and a lack of screening could be the reason why.
Once a diagnosis is made, Dr. Chandler also believes “integrative augmentation,” which provides holistic support to cancer care, isn’t readily available to all Black women. “Nutrition, mindfulness, and exercise are great additions to cancer care,” she says. “Do these women have access to these services that are covered and in their neighborhoods?”
Can we change the system?
Implicit bias would have to disappear to truly eliminate the issues—but there is real opportunity for change if the medical community is willing, says Thomas Samuel, M.D., a breast oncologist at Cleveland Clinic Florida. Health care providers must work harder to facilitate effective communication with marginalized communities.
“I think we have to actually go out into these communities rather than wait for them to come to us as medical providers, in order to break down the barriers of access to medical care,” he says.
One strategy might include cooperation between cultural organizations and medical centers; doctors and staff could go to community centers or churches with information sessions, yoga classes, or nutrition support. Hospitals could set up tents at community events, to increase their visibility.
White practitioners can also seek out research and conferences that focus specifically on the experiences of marginalized patients. These, plus open lines of communication, can start to counteract learned biases that prevent patients from getting quality care. In the meantime, here are two ways patients can help themselves.
✔️ Advocate for yourself.
This can be uncomfortable, but Dr. Samuel, who is Indian American, believes self-advocacy is a powerful tool and one way to use it is to wield the power of the second opinion. It’s important to feel heard by a doctor, so “I recommend a second opinion any time there is a lack of understanding between a provider and the patient,” he says. “If you are not sure that you understand what a care provider is saying to you, or there are doubts, it is always a good idea to get another opinion from another provider to make sure you are fully aware of all care options.”
Second opinions also open the door to discovering research-based options that your original provider may not have thought to recommend. “There are always new and exciting treatments available through these research protocols, and they provide access to treatment options that would not otherwise be available especially to our underserved patients,” explains Dr. Samuel.
✔️ Do your research.
Knowledge about your condition can help ensure you’re receiving adequate care. “I would encourage patients not to enter into a treatment plan unless they fully understand all the potential risks and benefits involved,” Dr. Samuel says. Learn more about cancer, and how other people are facing it, through these organizations:
- African American Breast Cancer Alliance
- Sisters Network for Breast Cancer
- Black Women’s Health Imperative
- Latinas Contra Cancer
- American Cancer Society
- National Cancer Institute
Healing the relationship between the medical community and marginalized communities will take courage on behalf of doctors—and it won’t be linear.
“We have to work with a greater dedication and purpose to provide care to all members of our society equally and fairly,” says Dr. Samuel. “This is difficult in underserved populations, but requires our constant attention and investment. Only with a dedicated effort to providing care to the less resourced populations can we provide great care for everybody.”
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