By Laurie Wertich
When Karen Jackson was diagnosed with Stage II breast cancer in 1993, she was bewildered—not just by the diagnosis but by the disparity she saw between African-American women and women of other races and ethnicities. “The disparities were alarming to me. In talking with other African-American women, I kept hearing the common experiences of unequal medical treatment and access,” she explains.
In Karen’s case, the diagnosis was the result of her proactive approach to healthcare. At age 35 she began getting annual mammograms because of her family history, and at age 50 an ultrasound revealed a 3.5-centimeter tumor that did not show up on the mammogram. Karen says, “Fortunately, my persistence in requesting more testing helped save my life. I had insurance, so my situation was not quite as dire as it is for people who are underserved and don’t have insurance.”
Still, she saw that even with insurance the access to care was inadequate for African-American women. In fact, the statistics were nearly as frightening as the diagnosis. Fewer Black women were being screened and adequately treated—and more of them were dying.
Karen underwent treatment and became not just a survivor but a breast cancer advocate. Nineteen years later the founder and CEO of Sisters Network Inc.—a national African-American breast cancer survivorship organization—is still working tirelessly to educate the African-American community about breast cancer and eliminate the disparity.
What Exactly Is the Disparity?
Breast cancer disparity is complex and multifaceted. To begin with, Black women have a lower incidence rate but a higher mortality rate of breast cancer compared with their White counterparts. Translated, that means African-American women are less likely to develop the disease but more likely to die from it—a lot more likely, in fact.
Black women have the highest breast cancer death rates of all racial and ethnic groups and a 41 percent higher rate of breast cancer death than White women.1,2 That is not a typo—it’s a staggering statistic: Black women with breast cancer are 41 percent more likely to die from the disease than White women. What’s more, African-American women are less likely to survive for five years after diagnosis.3
But the disparity doesn’t stop there. African-American women are more likely to develop breast cancer at a younger age (under 50) and often have a more aggressive form of the disease called triple-negative breast cancer, which means the cancer does not express the gene for estrogen receptor, progesterone receptor, or HER2 that can stimulate breast cancers to grow—and therefore is immune to many of the targeted treatments that can be used to block tumor growth. Triple-negative breast cancer tends to grow and spread more quickly than other types of breast cancer. Black women are three times more likely to develop triple-negative breast cancer than their White counterparts. In fact, research indicates that 20 to 30 percent of breast cancers diagnosed in African-American women are triple-negative.4
The blame doesn’t lie with just triple-negative breast cancer, however. More-recent research has found that Black women have a worse prognosis than White women regardless of breast cancer subtype.5
The bottom line: African-American women experience a triple whammy when it comes to breast cancer—younger age at diagnosis, more-aggressive types of cancer, and higher mortality rates.
Why the Disparity?
There is no simple answer to what lies behind the disparity, but it is most likely the result of both socioeconomic and genetic factors. Research to determine whether there is a genetic component to the higher rate of more-aggressive cancers and the younger age at diagnosis is ongoing. In the meantime there are a variety of socioeconomic factors that may be contributing to the staggering mortality rate among African-American women with breast cancer—namely inadequate screening, inadequate treatment, and lack of access to treatment.
Abenaa Brewster, MD, MHS, associate professor at the University of Texas MD Anderson Cancer Center, explains that one of the key factors that contributes to mortality is a later stage of cancer upon diagnosis: 45 percent of Black women have cancer that has spread beyond the breast when diagnosed compared with 35 percent of White women.6
This later stage at diagnosis may be the result of inadequate screening. Screening refers to the use of mammography (an X-ray of the breast) in women without breast symptoms to detect breast cancer at an early stage when it is most easily treated. Women who don’t get screened for breast cancer are more likely to present with a later stage of cancer and subsequently have worse outcomes. Some data indicate that African-American women are less likely to receive adequate screening.7 But inadequate screening is only part of the story.
“There is a lack of access to care,” explains Dr. Brewster. “So, even patients who get diagnosed may not get treatment. And among those who do get treatment, it is less likely to meet the standard of care. In other words, it is a systematic problem related to screening, access, and treatment.”
Indeed the databases that track cancer incidence, treatment, and outcomes do show different treatment patterns among women of different races. But a database doesn’t answer the question Why? Why don’t African-American women receive the standard of care—sometimes referred to as “best practices”?
“Some people speculate that Black women don’t get best practices because they sometimes come in with more co-morbidities—such as hypertension, diabetes, or obesity—that may not permit them to get standard treatment,” Dr. Brewster says. “But I don’t know if that is the whole story. It may also have to do with poverty, lack of education, physician bias, or other factors. I really think it’s a problem on many levels.”
And Dr. Brewster is quick to note that databases don’t always paint the whole picture. “I might have an African-American patient who refuses chemotherapy, so she is going to show up in that database as not getting the standard of care—but it’s not because we didn’t recommend it,” she explains.
Bridging the Gap
There is no question that a disparity exists. We know that African-American women are dying at a much higher rate from breast cancer—a disease that typically has a 95 percent survival rate. So, how do we change it?
According to Dr. Brewster, it is a matter of going after the “low-hanging fruit”—or the easiest problems to address. “We need to improve screening rates and get African-American women in for state-of-the-art treatment for breast cancer,” she says. “We know that the way we are treating breast cancer works. The survival rate is 95 percent. It’s just a matter of getting these women in for the right treatment.”
But how do you improve screening and treatment rates? And if it is so simple, why haven’t we done it yet? Dr. Brewster holds out hope that the Affordable Care Act is going to improve access to screening and treatment. “There is a big emphasis on prevention, so the expectation is that women should be able to get a mammogram,” she explains. “We hope to have better screening rates, and this might help with stage at diagnosis. And, hopefully, access to care will improve, and this will level the playing field and allow all women to be treated.”
Improved access is one piece of the puzzle—but how do you get women to take advantage of the improved access? “We can always do better with education,” Dr. Brewster says.
Educating the Sisterhood
Sisters Network Inc. is a national organization with affiliate chapters in 44 cities and 22 states. “Our focus as a national organization has been to increase breast cancer awareness and educate the African-American community,” Karen explains. “We educate women across the country, through our affiliate chapters and through outreach organizations, and encourage everyone to be proactive and start screening early—even before the recommended guidelines due to the breast cancer mortality rate crisis.”
Education and awareness are critical. “Knowledge is power,” Karen says. “And knowledge about what you need can be more important than money or insurance.”
Although all women are at risk for breast cancer, African-American women face unique risks that may require unique screening and treatment approaches. Karen explains that Black women tend to have denser breasts, which can be a predictor for risk of breast cancer. What’s more, mammograms of dense breasts can be harder to read, making them less sensitive and increasing the risk of missed cancers. Supplemental screening with ultrasound in high-risk groups—such as those with dense breasts—has been shown to result in a higher cancer detection rate.8
This is the type of lifesaving information that Sisters Network is determined to share in the African-American community. “We tell African-American women that they must be proactive,” Karen says. “They should start screening earlier and get a base ultrasound.”
Of course, screening is not enough if there is no follow-up or follow-through. Unfortunately, African-American women are much more likely to delay following up with a doctor after an abnormal mammogram: 20 percent of Black women wait more than 60 days to follow up compared with 12 percent of White women.9 What’s more, only 69 percent of Black women start treatment within 30 days of diagnosis compared with 83 percent of White women.10
Sisters Network educates women about follow-up, treatment options, and the benefits of going to a major cancer center for treatment. “We explain to women that they can survive breast cancer if they find it early and receive treatment at a quality cancer center. And all cancer centers are not equal,” Karen says.
Ensuring Access
Because African-American women are more likely to develop aggressive cancers at a younger age, screening is imperative to catch cancers early, when they are most treatable. In 2009 the US Preventive Services Task Force released new recommendations for beginning mammography screening at age 50, however, which poses a conundrum for a population of women who are more likely to develop the disease between age 20 and 50.
“Our organization strongly disagrees with the new guideline recommendations. We are outraged, and we don’t accept the new guidelines,” Karen says. “Given the high breast cancer mortality for African-American women, Sisters Network’s years of experience and study data support why African-American women should start screening at age 35.”
Sisters Network isn’t just educating Black women about the need for early screening—it is also removing the financial barriers that prevent some women from following through. Its Breast Cancer Assistance Program (BCAP) provides a variety of services to women in need, including free mammograms and lodging for women undergoing treatment.
Similarly, the Centers for Disease Control and Prevention has a program called the National Breast and Cervical Cancer Early Detection Program (NBCCEDP), which provides access to breast and cervical cancer screening services to underserved women in all 50 states, the District of Columbia, 5 US territories, and 11 tribes.
“Everyone should be entitled to the best medical care,” Karen insists. “It shouldn’t have anything to do with your economic status, where you live, or your ethnicity, religious affiliation, or social circle.”
Survivorship
Dr. Brewster points out that there is another important aspect of breast cancer: survivorship.
“We think of breast cancer now as prevention first, then screening, then treatment, then survivorship,” Dr. Brewster explains. “We have a lot more breast cancer survivors, and those women remain at risk of developing new breast cancers and are also at risk of long-term effects of treatment.”
During survivorship, women may face such issues as sexual dysfunction, an increased risk of cardiovascular disease, and a need for emotional and spiritual counseling.
“With African-American women, sometimes we get them through treatment and then don’t engage them in the survivorship tier,” Dr. Brewster says. “This is very important because we now have so many more survivors and we have to pay attention to the disparities that occur there too.”
The Big Picture
In short, incidence rates can be deceiving. Overall, African-American women do have a lower incidence of the disease; however, when breast cancer does occur in these women, it can be more deadly. As such, Black women may benefit from better screening and prevention efforts—and more-aggressive medical treatment.
There is no surefire way to prevent breast cancer, but data from studies related to prevention show that women can reduce their risk by maintaining a healthy lifestyle, reducing alcohol intake, engaging in regular physical activity, and maintaining a healthy weight.
References
1. Cancer Facts & Figures for African Americans 2013-2014. American Cancer Society website. Available at: http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-036921.pdf. Accessed July 5, 2013.
2. Howlader N, Noone AM, Krapcho M, et al. SEER Cancer Statistics Review, 1975-2009: Fast Stats. National Cancer Institute website. Available at: http://seer.cancer.gov/csr/1975_2009_pops09/index.html. Accessed July 5, 2013.
3. Jemal A, Clegg LX, Ward E, et al. Annual report to the nation on the status of cancer, 1975-2001, with a special feature regarding survival. Cancer. 2004;101(1):3-27.
4. Stead LA, Lash TL, Sobieraj JE, et al. Triple-negative breast cancers are increased in black women regardless of age or body mass index. Breast Cancer Research. 2009;11(2):R18. doi: 10.1186/bcr2242.
5. Kroenke C, Kwan M, Bernard P, et al. Race and breast cancer prognosis by PAM50 subtype in the LACE and Pathways Studies. Presented at: 2013 Annual Meeting of the American Association for Cancer Research; April 6–10, 2013; Washington, DC. Abstract 131.
6. Vital Signs: Racial Disparities in Breast Cancer Severity—United States 2005-2009. Centers for Disease Control and Prevention Morbidity and Mortality Weekly Report. November 13, 2012; Volume 61. Available at: http://www.cdc.gov/media/releases/2012/docs/dpk-breast-cancer-disparities-MMWR.pdf. Accessed July 5, 2013.
7. Smith-Bindman R, Miglioretti DL, Lurie N, et al. Does utilization of screening mammography explain racial and ethnic differences in breast cancer? Annals of Internal Medicine. 2006;144(8): 541-53.
8. Berg WA, Zhang Z, Lehrer D, et al. Detection of breast cancer with addition of annual screening ultrasound or a single screening MRI to mammography in women with elevated breast cancer risk. Journal of the American Medical Association. 2012;307(13):1394-404. doi: 10.1001/jama.2012.388.
9. Richardson LC, Royalty J, Howe W, Helsel W, Kammerer W, Benard VB. Timeliness of breast cancer diagnosis and initiation of treatment in the National Breast and Cervical Cancer Early Detection Program, 1996-2005. American Journal of Public Health. 2010;100(9):1769-76. doi: 10.2105/AJPH.2009.160184.
10. Lund MJ, Brawley OP, Ward KC, Young JL, Gabram SS, Eley JW. Parity and disparity in first course treatment of invasive breast cancer. Breast Cancer Research and Treatment. 2008;109(3):545-57.
The Facts about the African-American Breast Cancer Disparity
Lower incidence. African-American women have a lower incidence of breast cancer than other racial/ethnic groups.
Higher death rate. Black women have the highest breast cancer death rates of all racial and ethnic groups and a 41 percent higher rate of breast cancer death than White women.
Shorter survival. African-American women are less likely to survive for five years after diagnosis.
Diagnosis at a younger age. Black women are more likely to be diagnosed with breast cancer before the age of 50.
More-aggressive cancer. African-American women have a higher rate of more-aggressive breast cancer, such as triple-negative cancer.
Dense breasts. Black women have denser breasts, which is a predictor of breast cancer risk and can also limit the sensitivity of a mammogram.
Signs of Breast Cancer
Many women with early breast cancer have no symptoms, which is why screening is so important. Between regular mammograms, women should pay attention to any and all of the following signs:
A lump or mass
Swelling of all or part of the breast
Skin irritation or dimpling
Pain in the breast or nipple
Thickening of the nipple or breast
Discharge other than breast milk
Sisters Network Inc.
Sisters Network Inc. is a national African-American breast cancer survivorship organization committed to increasing education and awareness and reducing the disparity and the impact of breast cancer in the Black community. Its programs include the following:
Breast Cancer Assistance Program provides financial assistance for mammograms, medical-related lodging, and more.
Annual National African American Breast Cancer Conference is a one-day conference that takes place in 10 cities.
Educational webinars educate women who are unable to attend the conference.
Stop the Silence® Walk is a 5K run/walk that raises awareness about breast cancer as well as funds for the BCAP.
Resources for African-American Women
Sisters Network,
sistersnetworkinc.org
African American Breast Cancer Alliance, aabcainc.org
National Breast and Cervical Cancer Early Detection Program, cdc.gov/cancer/nbccedp