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."
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?”