More black women die of breast cancer, but
why?
Tiffany Jones was 29 years old when she found a small red bump on her
right breast. It looked like an insect bite, but it didn't go away. When she
went to see her doctor, she asked for a biopsy. He insisted that it wasn't
necessary, but he did it anyway to give her peace of mind. An hour later, he
called her while she was at lunch.
"You're not
going to believe this," he said.
Tiffany
responded, "I have breast cancer, don't I?"
Tiffany Jones is
one of a growing number of African-American women —especially young women —who
are diagnosed with breast cancer every year. Breast cancer is the most common
cancer among African-American women, and they are likely to develop cancer at a
younger age. In fact, a new study shows that these women are 40 percent more
likely to die of the disease than their white counterparts.
In Houston, a
black woman is twice as likely to die from the disease, according to the
research published in Cancer Epidemiology that
ranked major metro areas. In Los Angeles, the risk goes up to 70 percent.
Since the 1990s,
survival rates for white women have shot up, according to the findings, but
have only gone up a little for black women. Why have advances in breast cancer
treatment skipped black women? Doctors and researchers say that economic
disparities that disproportionately affect African-Americans are to blame, as
well as lack of health insurance, but genetics, culture and a history of
distrust and discrimination all play a role.
The economics of illness
Jones started
aggressive treatment right away, resulting in a lumpectomy, chemotherapy and
radiation treatment. She is now the founder of PinkChoseMe, a foundation for women with
breast cancer and survivors, and says a primary reason the women she works with
don't get treatment is that they can't afford it. Jones was lucky because
family and friends helped pay for her treatment, but many women are not so
fortunate.
A mammogram can
cost $250 to $400. A single round of chemo costs thousands. “If you work 9 to 5
without vacation and sick benefits, when are you going to go to the doctor?
After work, you have to pick up your kids,” says Jones.
A survey from the American Cancer Society found
that one-quarter of U.S. cancer patients put off getting a test or treatment
due to cost. Director of the cancer care research program at Duke University,
Dr. Amy Abernathy, did a study of 250 patients, most of whom had breast cancer.
All but one had insurance, two-thirds were covered by Medicare, and nearly all
had prescription drug coverage.
Still, even with
insurance, their out-of-pocket expenses averaged $712 a month including medical
bills, drugs and lost wages. Half skimped on food and clothes to pay for cancer
medication, 43 percent borrowed money or went into debt. Over 20 percent failed
to fill their prescriptions fully or took less than prescribed because of cost.
So is this
largely a poverty issue? Yes — but not entirely, says Dr. Jessica Shepherd,
assistant professor of OB/GYN at University of Illinois at Chicago, who is a
gynecologist and women's health expert and a black woman.
According to
americanprogress.org, 26.5 percent of
African-American women are poor compared to 11.6 percent of
white women and poverty makes it harder for to get access to
good care, but that's only part of the story, says Shepherd. Breast cancer
studies have been conducted mostly on caucasian women, so the research and
advances favor the kinds of cancer that white women have, she says. This is in
part because of a cultural mistrust of the medical community. She uses the
notorious 40-year "Tuskegee Experiment,"
in which 399 black men with syphilis were told that they were being
"treated" but were actually allowed to suffer and die from the
disease so that doctors could study the effects, as an example.
"I empathize
with these patients," says Shepherd, who serves many minority women in
downtown Chicago, and founded HerViewpoint,
a network for women's health. "Because I'm a minority in my field, I see
their frustration. They are not used to hearing these kinds of words and ideas,
and they are hearing them from someone who is not their gender, color or
culture." A doctor's office can be intimidating for anyone, and it's hard
to speak up and say that you don't understand what's being said, she says.
"But it's magnified for someone who is different."
Navigating alone
For uninsured
women, the process of getting help is even more daunting. If a woman has
symptoms of breast cancer — like a lump or pain — and goes to the E.R., she
will likely not give her a mammogram, says Donna Duncan, executive director of
the Linda Creed Breast Cancer
Organization in Philadelphia. She's released without a
diagnosis, and it's up to her to navigate the health care system and get a
mammogram, assuming that she can pay for it out of pocket.
Duncan's
organization helps women get free mammograms and follow-up care, and about a
third of the women that they serve are African-American. Women without
insurance are less likely to see doctors for check-ups, so they often seek
treatment because they have found a lump themselves, which often means that the
cancer is at a more advanced stage, says Duncan.
Just getting
diagnosed, Duncan says, involves a "battery of tests that are very
stressful" and time-consuming. "A lot of our women have kids and many
are working women. Some of them have harder physical jobs, and if you're
getting chemo you can't waitress very long," she says.
Duncan follows up
with some of her patients — especially the ones with advanced symptoms — by
calling them herself. "Until someone tells them there's a free service,
they don't know what to do," she says. There is a certain amount of denial
and "praying it away" that goes on.
More risk factors
Dr. Rachel
Freedman, clinician and researcher in the Susan F. Smith Center for Women’s
Cancers at Dana-Farber Cancer Institute, says black women and white women now
get mammograms at almost equal rates. Black women do tend to have more
aggressive types of cancer and don't seem to get all the necessary treatments,
such as radiation and chemotherapy. "Black women have lower rates in
receiving all those things," says Freedman.
Black women often
get more aggressive forms of cancer, and it attacks women at younger ages,
which makes it more likely that cancer will return, says Freedman. She says
that some of the blame falls on providers, who fail to follow up. "Breast
cancer is complicated," she says. "Women get diagnosed and need a
surgeon, a medical oncologist, a radiation oncologist, sometimes a plastic
surgeon." It's easy to get overwhelmed and fall through the cracks, she
says.
Steve Whitman,
director of Sinai Urban Health Institute in Chicago, and the study’s senior
author, said that discrimination can't be discounted as part of the problem. “I
don’t mean that a bad person is at the door personally keeping women out, but
the system is arranged in such a way that it’s allowing white women access to
the important gains we’ve made since 1990 in terms of breast health, and black
women have not been able to gain access to these advances," he told the New York Times.
He dispelled the
idea that the disparity is primarily due to genetic differences, noting that
genes can't change that quickly. “Mathematically, it can’t be anything
genetic,” Whitman said. “How could genes change in 20 years?”
Email: laneanderson@deseretnews.com
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