Before she walked into the office, Adrienne Moore already knew what doctors were going to tell her: her cancer had returned. Thirteen years after beating ovarian cancer, she now had endometrial cancer. What Moore was not prepared to hear that it was at an advanced stage 3, and treatment would be difficult. This was shocking because for nine months, Moore had insisted that doctors take her list of health concerns seriously. These included having a menstrual cycle that vacillated between absent, spotty, and so heavy she needed a rolled-up towel to help soak up blood, as well as pelvic pain. She also attended every appointment with copies of her medical file, and she let all her physicians know that she was a cancer survivor. Moore was told—repeatedly—by doctors that she had no reason to worry. "I'd ask, 'Should I be concerned?' And they'd say, 'No, you're a Black woman, you get fibroids. You're a Black woman, you might have thickening of the uterus,' says the 50-year-old respiratory therapist.
Some could hear Moore's story and chalk it up to one woman's unfortunate experience. But the truth is that what happened to her mirrors reality for many Black women in the United States. At times she was uninsured—meaning diagnostic tests were not ordered by physicians because she could not afford to pay for them out of pocket. And many of her doctors were white men who, she says, "spoke at, not to" her.
Moore's situation also echoes another dangerous reality for Black and other women of color: when her cancer diagnosis came, it was in the later—harder to treat—stages. "They might be diagnosed once the cancer has already metastasized, or it's a more complicated kind of surgical procedure or chemo or whatever other kinds of treatments are available for particular cancer," Tina Sacks, PhD, an associate professor at UC Berkeley's School of Social Welfare and author of Invisible Visits: Black Middle Class Women in the American Healthcare System, tells Health. The numbers support this in a way that initially sounds counterintuitive. Women of color have lower rates of cancer diagnosis, but higher rates of cancer-related deaths. The reason: "Black women, Latinx women, as well as Indigenous women have a harder time accessing health care, and so tend to be diagnosed at a later stage, and that is one of the major reasons that the mortality rates are higher," explains Sacks.
Black women have a 7% lower chance of getting a cancer diagnosis than white women, but a 13% higher chance of death. These numbers jump to a 41% higher death rate for breast cancer and 98% for uterine corpus (aka, the body of the uterus) cancer. In fact, Black women have the highest rates of death for uterine cancer of any racial/ethnic group.
Compared to white women, other racial groups in the United States also have disproportionately high rates of cancer incidence or death. Vietnamese-American women have higher rates of cervical cancer than white women, and Asian/Pacific Islander women are twice as likely to have stomach cancer. Latinx women are 20% more likely to die from cervical cancer than white women. Compared to white women, Native American women have higher rates of liver, stomach, kidney, colorectal, and cervical cancer, according to the CDC.
While the reality of higher cancer-related deaths holds true generally for women of color, medical experts stress that Black women's alarmingly high rates of cancer-related deaths (the highest for any women in the United States) are for reasons that are specific to being Black in America. "The health experiences of Black people are quite distinct from other people of color," says Sacks. "The history of discrimination, structural discrimination, the way our society is arranged is a society that is fundamentally racist, and it is fundamentally anti-black. That means that Black people are living with and essentially dying from racism all the time. It's not something that is speculative. It's just a fact."
Alongside the reality of these disproportionate numbers, there is a growing body of work—from studies to government programs to initiatives by organizations—to reverse this dangerous trend. Here, experts weigh in on the reasons behind race-based cancer disparities, as well as solutions that have (or should be) put in place.
How things became so bad
A number of factors are behind this health disparity. "A huge component of this are the social determinants of health, which is essentially a catch-all term that includes structural racism," Fumiko Chino, MD, a radiation oncologist at Memorial Sloan Kettering Cancer Center, tells Health. "It includes things like food deserts leading to obesity. It includes things like access to care and insurance." Cancer survival increases significantly as a result of preventative care. Yet many Americans of color do not have health insurance, meaning that preventative care is also cost prohibitive. According to the US Department of Health and Human Services, 75% of white Americans had private health insurance in 2017, compared to 55% of African Americans, 51% of Native Americans, and 49% of Latinx people. Poor health care not only leads to not getting screenings, but also—as was the case with Adrienne Moore—doctors not doing costly detection services such as ultrasounds and biopsies.
Economics plays another critical role. People with lower socioeconomic status (in 2017, 21% of Blacks compared to 9% of whites were living below the poverty level) are more likely to engage in behaviors or live in communities that increase cancer risk or rates for survival. This can include having less chance for physical activity or limited access to fresh fruits and vegetables. It can also mean living in neighborhoods that lack clean water or air that may contain cancer-causing substances. A 2018 EPA report found that African Americans are more likely to reside near landfills and industrial plants that pollute water and air. And Black Americans are three times more likely to die from exposure to air pollutants than whites.
Living at or below the poverty line can also impact a person's ability to get care, even if they have health insurance. They may not be able to afford gas money to drive long distances to screening sites for cancer detection. Those without unpaid time off of work may be unable to go to non-urgent medical appointments.
A biological element also puts Black women at greater risk for dying from breast cancer. Triple-negative breast cancer is breast cancer that is negative for estrogen receptor, progesterone receptor, and human epidermal growth factor 2 receptor. According to the American Cancer Society, this type of cancer is twice as common for Black women than white women in the United States. "Triple-negative breast cancer tends to be a more aggressive form of breast cancer, and it doesn't have the typically more successful treatment options like tamoxifen or an AI or something like trastuzumab," Onyemaechi Okolo, MD, an oncologist at The University of Arizona Cancer Center and an integrative medicine fellow at The University of Arizona Andrew Weil Center for Integrative Medicine, tells Health.
What is happening to address the cancer gap, and what should be done?
The answer on how to end cancer disparities—and all other health disparities—is clear: end systemic inequalities. Yet this is also the pie-in-the-sky answer, the one which seems unlikely to happen in the near future. However, experts and initiatives are chipping away at the crisis in ways that are making strides. Says Dr. Chino: "It's really such a complex problem. But I always say that the good thing about complex problems is that they have many, many solutions." Major ones include:
Lessen the financial burden of cancer care
When Dr. Chino's husband was diagnosed with cancer in 2005, she learned firsthand about the destabilizing effects of high health care costs. After his death, she left her career in children's television and went to medical school to study oncology. She also focused her research on the financial toxicity of cancer care costs. According to 2017 research published in JAMA Oncology, cancer care—even for people with health insurance—can cost up to one-third of a household income. While any individual can experience financial toxicity in care, it disproportionately impacts Black and other people of color in the United States. A 2018 study found that found that 4.7% of Black women and 6% of Latinx women lost their homes as a result of paying for treatment for early stage breast cancer. "Our treatments are costing so much money that they're actually causing homelessness for some of our patients," says Dr. Chino. "My specific focus is on costs [of treatment], but you also have to consider the costs of time away from work—for example, if you are in a job that doesn't have sick leave, or if you're in a job that's an hourly wage where any time when you're not at work, that's not income coming in."
In order to offset the high costs of cancer care, some patients will take less pain medication (for example, only swallowing half a pill to stretch the prescription). Chino has had patients take every other dose of their chemotherapy pill or not fill entire prescriptions. "They said, 'You know what? I went to the pharmacist. It was going to cost $5,000. It's that or my car note and my mortgage and my food for the month.' And so we all know what happened." There are systemic as well as organizational changes that can be made to alleviate financial toxicity. Bringing down the cost of treatment and medication is the most obvious way to make cancer cost less. But beyond the unlikelihood of this systemic overhaul, there are a number of changes that hospitals and treatment centers can make. These include free parking; scheduling appointments when it is convenient to the patients work schedule (not to the doctor's); making free food available while in the waiting area; telehealth; and limiting the time that people are waiting for their appointments, so they don't have the whole day off of work.
"It's not making their balance zero. It's not health care for free, but it's just making it a little easier," says Chino. "The tragedy of financial toxicity is that it can push people over, into a hole. And once you're in the hole, it's hard to get out of that hole."
Improve access to screening
Screenings are a critical tool for detecting certain cancers in early stages, such as breast, cervical, and colorectal cancers. Yet Black women typically are getting screened less than other groups. For that reason, Dr. Okolo sees increasing access to screenings as the biggest action that can save lives.
The passage of the Affordable Care Act (ACA) in 2010 was a major federal step in increasing access to screening. It requires all health insurance plans to fully cover mammography screening every one to two years for women over 40. As groundbreaking as this was, the ACA (aka, Obamacare) was not the first landmark federal program to focus on screenings. In 1990, the CDC launched the National Breast and Cervical Cancer Early Detection Program (NBCCEDP). The program funds screening and diagnostic services at centers across the country so that lower income, uninsured, and underserved women have access to breast and cervical cancer screening. Some states have also taken on the challenge of improving screening rates. In 2004, Delaware committed to providing free colorectal cancer screenings for residents who could not afford it. Within five years of the program's launch, the number of Black residents getting screened rose to equal the number of white residents—suggesting that if a service is made available, the disparity gap can be closed.
Bring more diversity to clinical trials
The focus on how to lessen health disparities tends to be on what happens in the doctor's office, but much can be done on the research side. Between 1993 and 2013, less than 2% of cancer studies had enough racial and ethnic diversity to produce relevant results. There is also a stark lack of women of color enrolled in clinical trials for drugs to treat various forms of cancer.
"These new drugs that are being approved, they may not work in the same way with different biology for a Black woman with triple negative breast cancer, as it does on a white woman. They may have different side effects profiles. When we have a diversity of clinical trial enrollees, then we will actually get better real world outcomes when that drug has been delivered," says Dr. Chino. There are a number of ways to address this. One is to have clinical trials at locations within communities of color, to alleviate the barrier of travel costs and travel time. Second, trials can be created in ways that are more responsive to diverse groups of people. Says Dr. Chino: "For a Latinx population, how do we offer clinical trials in languages that they understand, so that they can enroll with truly informed consent? How are we doing outreach to reach populations that are underrepresented?"
Third, in order to address how certain cancers target certain groups disproportionately (such as Black women and triple-negative breast cancer), trials can also be more targeted. "Some of that is designing trials specifically with them in mind, but also having more Black women enrolling women in trials. Having more Black physicians, having more Black leaders within cancer centers," explains Dr. Chino.Diversify workplaces—and community outreach
Studies show that when Black people see Black nurses and physicians, their health outcomes tend to improve. "When you have a Black patient and a Black physician, there is kind of that already removed barrier of cultural difference, but also it's easier to build trust amongst each other," says Dr. Okolo.
Yet oncologist Karen Winkfield, MD, PhD, the executive director of the Meharry-Vanderbilt Alliance, tells Health she does not believe that diversity should be limited to physicians and nurses. "It takes a decade to create an oncologist; it takes a long time to create nurses as well, so that's not going to help solve our immediate problems," she says. "When I say workforce diversity, I'm talking about who are the individuals at an institution that can be pulled in, that could be trained, that can be leveraged to help support the communities around their cancer journey?"
Dr. Winkfield has put this theory into practice. Prior to joining Meharry-Vanderbilt Alliance, she was a co-principal investigator of the Lazarex-MGH Cancer Care Equity program in Boston. She was responsible for community outreach in the program designed to improve clinical trial access and enrollment in vulnerable populations. "We were very successful in training up individuals who do not have a nursing or any medical background, providing them some basic information about healthcare," she says. "For the [Latinx] community, I had somebody who was bilingual, bicultural. For the Black community, I had someone who was Black. You can create workforce diversity without having stacks of degrees."
Outreach is exactly what Adrienne Moore credits with helping to save her life. As she was undergoing cancer treatment, she remembers, "I said, "God, this pain isn't for me. Everything that I went through, it wasn't for me, it's for somebody else. And you have to show me how to use my story.'" The answer soon came to her: She took an online survey from the group Endometrial Cancer Action Network for African-Americans (ECANA), and group founder Kimi Doll, reached out and asked her to become a patient advocate.
Today, Moore speaks to women about risk factors, symptoms, and the signs of cancer. "I can't do a whole lot to change someone's circumstance once they're inside of being treated for cancer," she says. "But I can support you. I can listen to you. I can be there for you."
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