Mary Singleton, 57, learned in July that she had Stage 4 breast cancer. After the diagnosis her son, George, moved home to Memphis to help take care of her and to help run her printing business.Video by Stephen Maing; Cover photo by Ruth Fremson.
By TARA PARKER-POPE
DECEMBER 20, 2013 162 COMMENTS
MEMPHIS — After her doctor told her two months ago that she had breast cancer, Debrah Reid, a 58-year-old dance teacher, drove straight to a funeral home. She began planning a burial with the funeral director and his wife, even requesting a pink coffin.
Sensing something was amiss, the funeral director, Edmund Ford, paused. “Who is this for?” he asked. Ms. Reid replied quietly, “It’s for me.”
Aghast, Mr. Ford’s wife, Myrna, quickly put a stop to the purchase. “Get on out of here,” she said, urging Ms. Reid to return to her doctor and seek treatment. Despondent, Ms. Reid instead headed to her church to talk to her pastor.
“I was just going to sit down and die,” she says.
Like many other African-American women in Memphis and around the country, Ms. Reid learned about her breast cancer after it had already reached an advanced stage, making it difficult to treat and reducing her odds of survival. Her story reflects one of the most troubling disparities in American health care. Despite 20 years of pink ribbon awareness campaigns and numerous advances in medical treatment that have sharply improved survival rates for women with breast cancer in the United States, the vast majority of those gains have largely bypassed black women.
The Breast Cancer Gap
The difference in mortality rates between black women and white women with breast cancer has widened since 1975, in part because black women have not benefited as much from screening and treatment.
Click to explore differences in states:
2010
+8.8
GAP BETWEEN BLACK AND WHITE RATES
BLACK
WHITE
Breast cancer deathsper 100,000 women
'75
'10
The cancer divide between black women and white women in the United States is as entrenched as it is startling. In the 1980s, breast cancer survival rates for the two were nearly identical. But since 1991, as improvements in screening and treatment came into use, the gap has widened, with no signs of abating. Although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.
And Memphis is the deadliest major American city for African-American women with breast cancer. Black women with the disease here are more than twice as likely to die of it than white women.
“The big change in the 1990s was advances in care that were widely available in early detection and treatment,” said Steven Whitman, director of the Sinai Urban Health Institute in Chicago. “White women gained access to those advances, and black women didn’t.”
Over all, black women with a breast cancer diagnosis will die three years sooner than their white counterparts. While nearly 70 percent of white women live at least five years after diagnosis, only 56 percent of black women do. And some research suggests that institutions providing mammograms mainly to black patients miss as many as half of breast cancers compared with the expected detection rates at academic hospitals.
The gap in cancer survival cannot be explained away by biological differences in cancer between blacks and whites, researchers say. While African-American women are at greater risk of a more aggressive form of cancer known as triple negative, those cancers account for only about 10 percent of diagnoses.
Until she had a fiery argument with her pastor, Ms. Reid said she was not going to try to fight the cancer. Now she says she is going to dance her way through it.Ruth Fremson/The New York Times
Researchers from the Sinai Institute last year analyzed breast cancer cases in the country’s 25 largest cities and found that African-American women with breast cancer were, on average, 40 percent more likely to die of their disease than white women. In the United States, the disparity in breast cancer survival translates to about 1,700 additional deaths each year — or about five more black women dying every day.
Many Health Issues
News that Memphis has the widest survival gap between black and white hit the medical community here hard. When the breast cancer disparity study was published in the journal Cancer Epidemiology last year, Edward Rafalski was one of the first here to read it. He is senior vice president for strategic planning at Methodist Le Bonheur Healthcare, which operates eight hospitals in the Memphis area.
As it happened, Dr. Rafalski had previously worked at Mount Sinai Hospital in Chicago and knew the study’s lead author, Dr. Whitman of the Sinai Institute. As local headlines declared the city’s troubling record, Dr. Rafalski invited Dr. Whitman to the city. Memphis, population 655,000, is more than two-thirds black, and more than a quarter of its residents are poor.
“When you look at any epidemiological study, Memphis is often the epicenter of virtually any disease, be it diabetes, heart failure — there are a lot of health issues here,” Dr. Rafalski said. “But for breast cancer to be as bad as it is — that’s why everyone came to the table and said, ‘We have to do something.’ ”
THE CANCER DIVIDE
PART 1
Uganda Fights Stigma and Poverty to Take On Breast Cancer
PART 2
In Israel, a Push to Screen for Cancer Gene Leaves Many Conflicted
Dr. Whitman flew to Memphis for a strategy session. The study’s co-author, Marc Hurlbert of the Avon Breast Cancer Crusade, which funded the research, joined the conference by phone.
The solution, everyone agreed, would not be simple. Doctors and health care researchers say the reasons behind the black-white cancer divide are complex. Economic disparities that disproportionately affect African-Americans explain some of it. Years of racial discrimination and distrust of the medical establishment dating back to the Tuskegee, Ala., syphilis experiments on black men in the 1930s continue to influence health decisions made by African-American families in the South.
Lack of health insurance among low-income and self-employed women was also cited as an obstacle to timely care, a problem that may be eased if some of them gain insurance through the Affordable Care Act.
Black women often arrive at the hospital with cancers so advanced, they rival the late-stage disease that doctors see among women in developing nations. A study based on Medicare records published in July in JAMA, the Journal of the American Medical Association, found that 20 percent of African-American women with breast cancer did not learn of their disease until it had advanced to Stage 3 or 4. By comparison, only 11 percent of white women learn at late stages.
Doctors in Memphis and in cities around the country tell horrific stories of poor and uneducated patients, black and white, who arrive at the clinics with festering tumors or a breast that has been all but consumed by a growing cancer.
With a grant from the Avon Breast Cancer Foundation, researchers at the Methodist system analyzed their records of breast cancer patients and discovered that even in what is widely viewed as the top hospital system in the region, black patients took on average about a month longer to begin treatment after diagnosis compared with white patients.
“A large percentage of our African-American population is also poor, and poor people don’t have the luxury of being sick,” said Dr. Kurt Tauer, an oncologist with the West Cancer Clinic, which is affiliated with the Methodist system. “They have to take off work, find someone to give them a ride.”
Ms. Reid, center, relaxing at home with her sister, Audrey Anderson, left, and her friend Travia Davis.Ruth Fremson/The New York Times
But the larger issue, hospital officials say, is that many black women in Memphis do not seek health care at all. They do not undergo mammograms for screening or see a doctor when the earliest signs of breast cancer develop. Even among women with Medicare coverage, black women were significantly less likely than white women to have seen a primary care doctor in the six to 18 months before diagnosis, and also had far lower rates of breast cancer screening — 23.5 percent in that period, compared with 35.7 percent of white women, the JAMA study found.
The challenge is to get women screened and treated in good time. But how, the Methodist officials asked, do you reach African-American women who have felt excluded from the health care system for most of their lives?
Spreading the Word
It is often said that there is a church on every street corner in Memphis. In a half-mile stretch of Elvis Presley Boulevard, there are six: the Faith Temple Holiness Church, the Holmes Road Church of Christ, the CME Temple Christian Methodist Church, the Lily of the Valley Church of God in Christ, Our Savior Lutheran Church and the Holy Spring Baptist Church. Methodist hospital system officials estimate there are 3,000 to 4,000 churches in the area they serve.
“Our patients are in churches on Sunday,” said the Rev. Bobby Baker, director of faith and community partnerships at Methodist. “If we want to be in their lives when they’re not in our hospital, the church is where to find them.”
“I was in hiding. My clothes that once clung to my curves were falling off me. With no menstrual cycle, no hair and a spit cup thanks to the oral thrush I developed, I felt totally unsexy. However, strangely enough, at the same time, I felt beautiful.”
In 2005, the hospital system formed the Congregational Health Network. It began with 12 area churches and has grown to more than 500 congregations. Through the network, the hospitals have registered 18,000 people and given them messages promoting prevention, screening and health education. An analysis of hospital records shows that patients in the network fare better, staying out of the hospital four months longer than non-network patients with a similar diagnosis.
Dr. Rafalski and his Methodist colleagues realized that this network would be the best way to reach out to black women on breast cancer issues. With a grant from the Susan G. Komen Foundation, they hired Carole Dickens to work with pastors and congregants. During Sunday services, she spreads the word about early screening, gives women her cellphone number and follows up with those who share their contact information. She helps them gain access to public health programs and offers taxi vouchers so they can get to medical appointments.
Many of the women admit to never getting a mammogram and avoiding doctors. Sometimes, it is because they do not have health insurance, so Ms. Dickens refers them to free mammography programs in the area. Others admit they are stopped by fear.
“They have all kinds of reasons for not doing it,” Ms. Dickens said.
She said the women have told her: “I don’t want anybody cutting on me.”
“My mama died, and my aunt died and they suffered so much. I didn’t want to go through that.”
“If I’ve got it, I’ve got it. I’m going to die from something.”
A Daunting Task
Mary Singleton, 57, a Memphis print shop owner, noticed a lump in her breast in July. Because she did not have health insurance, she did not get the lump checked, telling herself that she did not need to worry because she did not have a family history of breast cancer.
Ms. Reid practicing with members of Sassy Seniors, a dance group she founded, at her home in Memphis.Ruth Fremson/The New York Times
One afternoon this fall, the Boulevard Church of Christ hosted a health fair, giving away pink bags that included pink pens, a key chain and a brochure from the American Cancer Society. It prompted Ms. Singleton to seek a free mammogram through the local health department. She learned she had Stage 4 cancer in October.
“It takes a while for the brain to process,” she said. “There’s a difference between what you heard about cancer, and now somebody is telling you that it’s your story.”
After years without health insurance, she was told that her cancer treatment would be covered by Tenncare, the state’s Medicaid program.
“I had to get cancer to get health insurance,” Ms. Singleton said, a tear rolling down her cheek. “I’ve been one of those people waiting for Obamacare, waiting for health insurance. And this is how I finally get it.”
After her diagnosis, her son George moved home from Iowa to help her run her printing business, which she had just opened about a month before learning of her illness. The business, named STBS, for Sisters Together Building Success, is in an office she leased from her church, just off Elvis Presley Boulevard.
On a recent day, she stepped out of her shop to watch a holiday parade move slowly past. She had printed some of the signs being carried in the parade, and she wanted to see them go by. A dance group called the Sassie Seniors strutted by in red Santa jackets. The leader, in a shiny red leotard and boots with faux leopard fur, was none other than Ms. Reid, the dance instructor who began planning her funeral after learning she had breast cancer.
After the funeral home refused her business, Ms. Reid sought counseling from the Rev. Robert J. Matthews of the New Hope Baptist Church of Memphis. He is a 12-year survivor of colon cancer, and their talk was transformative for her.
“I’m not a weak person,” she said. “I decided to be a messenger.”
Ms. Reid, a former member of the Grizzlies Grannies, a dance team for the Memphis Grizzlies, the city’s professional basketball team, said she had avoided a mammogram for eight years because she found them so unpleasant. Last month, she called a meeting of the Sassie Seniors in the dressing room before a performance.
After becoming ill during a Sunday church service, Ms. Reid was aided by ushers.Ruth Fremson/The New York Times
“I revealed my breast so they could see it,” she said. “It was swollen. I made them touch it. It shocked them. Out of 21 people with me that night, 15 have already had mammograms, and others have them scheduled.”
While Ms. Reid, who has Stage 3 cancer, hopes her story will help other women, she knows that education is not enough. “A lot of us don’t have insurance,” she said. “And without insurance, a lot of stuff goes undetected.”
Ms. Reid, like Ms. Singleton, is undergoing treatment at the West Cancer Clinic.
Doctors say it will be months or even years before they know if their efforts to reach out to African-American women will lead to more early diagnoses and begin to narrow the black-and-white divide for breast cancer.
“It’s such a daunting task,” said Dr. Rafalski of Methodist. “It’s almost easier to throw up your hands, but we can’t. We have to fix it, one little step at a time.”
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