A troubling cancer death gap has long existed—but closing it is within reach.
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 was 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 mirror’s 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 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 everyone 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 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."
BY: Ayana Byrd, Health Magazine, April
23, 2021
Much Love,
Dr.Shermaine, #InformativeRead #PleaseShare #HealthyBodySoulAndSpirit
#IWantYou2LiveWell #FeelFree2SignUpAndFollow
The Goal is to Always Make You Aware of What Concerns
Your Body, Soul and Spirit, So You Can Have Open, Honest and Frequent
Discussions With Your Physicians and Counselors. You Can’t Treat or Cure What
You Don’t Know is Sick.
"It's Not Selfish to Love Yourself, Take Care
of Yourself and to Make Your Happiness a Priority. It's a Necessity."
(Mandy Hale)
"Self-Care is Not Selfish. You Cannot Serve From an Empty Vessel."
(Eleanor Brown)
The contents of the Health Magazine and Self-Care With
Dr. Shermaine Sites, such as text, graphics, images, and other material
contained on the Health Magazine and Self-Care With Dr. Shermaine Sites
("Content") are for informational purposes only. The Content is not
intended to be a substitute for professional medical advice, diagnosis, or
treatment. Always seek the advice of your physician or other qualified health
provider with any questions you may have regarding a medical condition. Never
disregard professional medical advice or delay in seeking it because of
something you have read on the Health Magazine and Self-Care With Dr. Shermaine
Sites!
If you think you may have a medical emergency, call your doctor or 911
immediately. Health Magazine and Self-Care With Dr. Shermaine does not
recommend or endorse any specific tests, physicians, products, procedures,
opinions, or other information that may be mentioned on the Sites. Reliance on
any information provided by Healthy Magazine, Health Magazine employees, others
appearing on the Site at the invitation of Health Magazine, and Self-Care With
Dr. Shermaine or other visitors to the Sites is solely at your own risk.
