Closing the gap: Why are more black women dying of breast cancer?

By Lane Anderson, Deseret News National Edition

Published: Wed, March 26, 2014, 9:55 a.m. MDT

 Breast Cancer survivors hold a giant American flag during pre-game ceremonies for Breast Cancer Awareness month before an NFL football game between the Jacksonville Jaguars and the San Diego Chargers in Jacksonville, Fla., Sunday, Oct. 20, 2013.

Breast Cancer survivors hold a giant American flag during pre-game ceremonies for Breast Cancer Awareness month before an NFL football game between the Jacksonville Jaguars and the San Diego Chargers in Jacksonville, Fla., Sunday, Oct. 20, 2013.

(John Raoux, Associated Press)

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

1. Copacetic
Hyrum, UT,
April 2, 2014

I don't know why it is sometimes considered taboo to admit there are physiological differences between Caucasians and Blacks. The simple fact of the matter is that there are differences... whether for the good or bad.
There are physical reasons 80% of the NBA is Black while 90% of tennis players are White. There are simply physical differences between races.

As the article pointed out, the fact that "black women and white women now get mammograms at almost equal rates" but that substantial differences still exist in their rates of cancer only verifies that there are physical differences between the races.

Of course there are other contributing differences, such as economic and social differences (as the article pointed out). And sadly, discrimination probably still plays a roll in the statistical disparity. But most people will freely admit those things.

What they seem to have a hard time admitting is that there are actual internal physical differences between races. And it's not racist to acknowledge it. In fact, it's a benefit to admit those differences so that further discrepancies in cancer rates can be better dealt with.

2. indi
, ,
April 2, 2014

Since abortions within the black community are at much higher percentages for the black population than white women and having had an abortion has been linked to cancer, I wonder how many of these women diagnosed have had abortions? I'd be much more inclined to believe that link than some genetic difference between the races in that regard.

3. Dr. Thom
Long Beach, CA,
April 3, 2014

First guess would be a lifestyle that is unhealthy and too few visits to the doctor for an annual checkup, but not to worry Obamacare with pay for that after they exceed their annual deductible of $6,000 per individual and $12,000 deductible like my ACA backed plan!

4. BlueEyesBrittany
Paris, 00,
April 3, 2014

I find the comment between abortions and breast cancer to be totally inappropriate. How many women died giving birth to children or exhausted from having too much on their plate or from violence from men. Being badly treated and having stress trying to survive is a more likely cause for people developping cancers.

Plus marrying to unfaithful men a great risk for hiv and std's and yet the mormons defended polygamy at one point and may still do.

5. BlueEyesBrittany
Paris, 00,
April 3, 2014

I find all comments totally out of place. Though living a healthy life that includes proper nutrition, regular exercise and sufficient sleep plays a part, genetic factors and stress also play a role.

Furthermore, if religions had taught about contraception, a subject that was taboo in many religions, and a sensible education about sex including safe practices, this mess would have been limited.

Finally, i am all for fidelity and always was, but how do you guarantee someone else's fidelity and, failing this, safe practices especially on men's part since women who have children are far too busy to have much time for it.

So be realistic with life. I have personally ceased to believe that religions turn men into better men. Sometimes, as in the case of polygamy, it is even worse. All women truly in love and loving their husband would never want to leave him, except in the case of abuse, cheating, violence or neglect, but is there any way you can guarantee someone's spouse good behaviour. Is it not more realistic to know how things are and find ways to minimise the consequences for the other ?