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Lovell A. Jones, PhD and Janice A. Chilton, DrPH

Lovell A. Jones is with the Department of Gynecologic Oncology and the Center for Research on Minority Health and Janice A. Chilton is with the Department of Gynecologic Oncology, the University of Texas M. D. Anderson Cancer Center, Houston.

Correspondence: Requests for reprints should be sent to Janice A. Chilton, DrPH, Department of Gynecologic Oncology, UT M.D. Anderson Cancer Center, 1515 Holcombe Blvd, Box 536, Houston, TX 77030 (e-mail: jchilton{at}mdanderson.org).

	ABSTRACT

TOP ABSTRACT INTRODUCTION THE IMPACT OF BREAST... UNDERSTANDING WHY DISPARITIES... CONCLUSIONS References

 

Despite all the gains that have been made in the area of breast cancer research, African American women suffer disproportionately from the effects of the disease. Breast cancer is the second leading cause of cancer death among African American women, exceeded only by lung cancer.

Improvements in cancer incidence, mortality, and survival rates among populations are undoubtedly the outcome of quality research. Therefore, there is a need to identify and discuss issues regarding breast cancer among African American women and to determine whether these issues should be a part of the nation's breast cancer research agenda.

This commentary summarizes the results of the Summit Meeting Evaluating Research on Breast Cancer in African American Women, which was held September 8–11, 2000, in Washington, DC. Listed are priority areas and some of the questions that fueled this 2-day discussion among 130 participants, including health advocates, cancer survivors, and experts representing various areas of cancer research.

	INTRODUCTION

TOP ABSTRACT INTRODUCTION THE IMPACT OF BREAST... UNDERSTANDING WHY DISPARITIES... CONCLUSIONS References

 
THE NATIONAL CANCER Institute, the agency with primary responsibility for conducting research on the prevention, detection, treatment, and control of cancer, has sponsored intensive research that has led to many important discoveries about all aspects of breast cancer.¹ However, the advances being made in the area of breast cancer research have not benefited all populations equally.²

The disparity in the rate of breast cancer survival between African American and White women is a decades-old problem.³ Each year, the American Cancer Society, the National Cancer Institute, and the Centers for Disease Control and Prevention, including the National Center for Health Statistics, collaborate to produce a "report card" to explain the nation's progress in preventing and controlling cancer in the United States.^4,5 The initial report card, issued in 1998, reported the nation's first continuing decline in cancer mortality since national record keeping was instituted in the 1930s.⁴ The 1998 report also noted, however, the disproportionate breast cancer incidence and mortality rates of African American women compared with White women. The incidence of breast cancer in African American women was continuously increasing, with no decrease in mortality trends.⁴ African American women also tended to present with a later stage at diagnosis.⁴ The 2001 report card documents similarly disturbing trends for some ethnic minorities and also indicates that African American women have the highest breast cancer death rates.⁵ African American women have not been—and clearly are not yet—winning the battle against breast cancer.

The United States has worked diligently to recognize and to address what the Institute of Medicine terms the "unequal burden of cancer."² We now understand, more than ever before, how breast cancer cells become cancerous, how the disease metastasizes, why some types of cancer are more aggressive than others, and why some women suffer more and are less likely to survive.¹ Research has led to more breast cancer detection and diagnosis techniques, better supportive care, and improved treatment and survival outcomes for patients.¹ Despite all the gains that have been made in clinical, basic, and behavioral research, African American women lag behind, continuing to be disproportionately affected by this disease.

This commentary summarizes the focus of the 2-day Summit Meeting Evaluating Research on Breast Cancer in African American Women, which was held September 8–11, 2000, in Washington, DC. Listed are the predefined priority areas and some of the questions that fueled discussion among health advocates, breast cancer survivors, and more than 130 experts from fields including basic science, oncology, radiology, genetics, public health, epidemiology, and data management. In addition, other predefined priority areas and questions pertaining to African American women were derived from the literature and from a 16-year effort, the Biennial Symposium on Minorities, the Medically Underserved & Cancer, a seminar series for scientific discussion and the dissemination of information related to cancer.

Recent breast cancer research efforts have not produced results to effect the necessary benefits for African American women. The results of discussions at the summit and the previous biennial symposia indicate that certain priority areas may need to be addressed as part of the national research agenda with regard to African American women and breast cancer.

	THE IMPACT OF BREAST CANCER ON AFRICAN AMERICAN WOMEN

TOP ABSTRACT INTRODUCTION THE IMPACT OF BREAST... UNDERSTANDING WHY DISPARITIES... CONCLUSIONS References

 
In the United States in 2001, an estimated 192 200 new cases of female breast cancer are expected to occur, and an estimated 40 200 women will die of the disease.⁶ In addition to the impact of breast cancer itself, women and their families must endure the emotional effects imposed by the disease and its treatment, as well as the fear engendered by the continued threat of recurrence.⁷

Breast cancer crosses all demographic lines, affecting women of all ages, races, ethnic groups, socioeconomic strata, and geographic locales.¹ We have come to understand, however, that women who are older, of African American or Hispanic descent, poor, residing in rural areas, and medically underserved are disproportionately affected by breast cancer.^4,5,8,9

Incidence
From 1973 through 1998, the incidence of female breast cancer increased by more than 40%, from 82.6 in 1973 to 118.1 in 1998.⁵ Breast cancer is the most common cancer among African American women, although the incidence rate of newly diagnosed cases is about 13% lower for them than for White women.¹⁰ Over the past 30 years, trends in breast cancer incidence among African American women show 3 distinct phases: a stabilization period during 1973 to 1980, followed by a period of rapid increase from 1980 to 1987 and another stabilization period from 1988 to 1997.¹⁰ The increase may be attributed to earlier diagnosis due to increased use of breast cancer screening from 1980 to 1987.

Mortality
The overall death rate from breast cancer continues to decline, owing primarily to improvements in early detection techniques and treatment⁵; however, serious disparities in mortality rates between racial groups remain.¹¹

In 1998, breast cancer comprised 16.3% of all cases of cancer and accounted for 7.8% of all deaths due to cancer.⁵ Breast cancer is the second leading cause of death among African American women, exceeded only by lung cancer⁹; despite the stabilization of mortality rates, breast cancer deaths among African American women are still approximately 28% higher than in White women.⁹ This difference may be related to later stages of diagnosis in African American women or to a greater likelihood of African American women being diagnosed with estrogen receptor negative tumors or more aggressive tumors, both of which are more difficult to treat.¹⁰ The 5-year survival rate for African American women who are diagnosed with breast cancer is 71%, compared with 86% for Whites.¹²

Questions regarding the course of breast cancer in African American women are still being debated. The presentations and discussions that took place at the summit reinforced the need to address the questions raised so that we can move forward in successfully attacking the disparities that exist.

	UNDERSTANDING WHY DISPARITIES EXIST

TOP ABSTRACT INTRODUCTION THE IMPACT OF BREAST... UNDERSTANDING WHY DISPARITIES... CONCLUSIONS References

 
As evidenced by the data presented in the 1998 report card, the number of deaths from cancer is being reduced measurably.⁴ The report also suggests, however, that for some populations, progress in some areas will occur slowly.²

Another objective of the summit was to foster among researchers the type of discussion and collaboration that will lead to a better understanding and explanation of the difference in breast cancer rates in this population. The summit was sponsored by the Center for Research on Minority Health at the University of Texas M. D. Anderson Cancer Center and cosponsored by the University of Texas M. D. Anderson Cancer Center; the Intercultural Cancer Council; Howard University Cancer Center; the Jean Sindab African American Breast Cancer Project at Columbia University; the Office of the Director, the National Institutes of Health; the National Institute of Environmental Health Sciences; the National Human Genome Research Institute; the Office of Research on Minority Health; the National Institutes of Health; the Susan G. Komen Breast Cancer Research Foundation; and Y-Me. The objectives of the summit were to address the breast cancer crisis in a "sound, scientific manner" by bringing together scientists, breast cancer advocates, and policymakers to "lay the groundwork" for the development of a breast cancer research agenda. The outcome of this summit will be the development of a set of position papers offering a comprehensive literature review of predefined areas of breast cancer research. Included in the papers are recommendations for addressing the identified gaps.

The summit format, a series of general sessions with a status report on "what we know" followed by breakout sessions to allow a discussion of "what we need to know," was organized around issues such as data acquisition, basic science research, treatment, prevention, epidemiology, and psychosocial issues. The following priority areas and predefined questions were discussed.

Unequal Data
One of the greatest barriers to addressing cancer within minority populations is the lack of adequate and consistent cancer data. Without such data, it is difficult to assess the current systems, contribute to the development of a plan to address problems, and better allocate resources.¹³

Predefined questions discussed:

• Do current national databases accurately reflect the impact of breast cancer in African Americans?
  
• How can we begin to address current limitations in data collection methods?
  

Risk-Assessment Models
There is an interest in refining methods to use a woman's risk factor profile to estimate her risk for developing breast cancer.¹⁴ The modified model developed by Gail and colleagues has been shown to provide a good prediction of risk (good calibration) for White women who have access to mammography.¹⁵ However, there are concerns about the performance of the model in subgroups for whom there are scant validation data, including African American women.¹⁵

Predefined questions discussed:

• What other factors should be incorporated into current risk models to make them more useful for estimating risk among African American women?
  
• What is the status of efforts to refine current models for use among ethnic populations?
  
• Should the focus be on the refinement of models such as the one by Gail and colleagues? Should the focus shift to biologic measures of risk? Should there be a parallel focus on both strategies?
  

Breast Cancer Genetics
We know that genetics can play a role in the development of cancer, although only a fraction of cases result from an inherited genetic predisposition.¹ Most breast cancers are caused by noninherited gene alterations that occur in breast epithelial cells.¹

Predefined questions discussed:

• What is the incidence of currently known deleterious mutations such as BRCA1 and BRCA2 among African American women?
  
• What is known about familial cancer syndromes that are prevalent among African Americans?
  
• What methods can be used to increase African Americans' participation in efforts to provide tissue to tissue banks?
  
• What is the status of efforts to (1) assess the health community's response to cultural and ethical issues regarding genetic counseling and (2) educate minority families that may benefit from genetic counseling?
  

Breast Cancer Treatment
The contribution of treatment to differences in prognosis can be examined in 2 ways.¹⁶ First, some studies have investigated whether suitable care, including adequate diagnostic procedures and therapy recommendations in accordance with national guidelines, was provided uniformly to Black and White patients.¹⁶ Second, other studies have addressed the efficacy of established therapies and how they differ among racial groups in an attempt to identify a so-called "treatment by race interaction."¹⁶

Predefined questions discussed:

• Are there ethnic differences in response to chemotherapy?
  
• Do African American women have different patterns of recurrence following breast conservation therapy?
  

Breast Cancer Screening
Research indicates that mortality due to breast cancer can be reduced by 30% among women aged 50 to 69 years through the use of mammography and clinical breast examination.^17,18 There has been an increase in the number of women who have undergone mammography screening. Although the proportion of women who have reported receiving breast cancer screening consistent with guidelines has increased, only 34% of women aged 50 to 59 years indicate that they are getting annual mammograms.¹⁹ Because breast cancer mortality rates are higher in African American women, it may be beneficial to encourage women in this population to take advantage of screening to reduce late-stage cancer diagnosis and mortality. The generation of trials now completed demonstrates that rates of repeated mammography can be increased through planned interventions.^20–22

Predefined questions discussed:

• Because African American women can have an earlier onset of breast cancer, will mammography screening at a younger age decrease mortality rates?
  
• What new breast screening methodologies may be particularly beneficial to African American women?
  

Nutrition and Breast Cancer
There is a need to find out more about diet and cancer in minority and medically underserved populations.² Dietary research indicates that there may be an association between diet and cancer.²³ Although the role of diet in preventing and reducing cancer incidence is not certain, different cancer mortality rates among Whites, African Americans, and Hispanics may be related to differences in diet.^23–25

Predefined questions discussed:

• Do dietary factors influence ethnicity-based variation in breast cancer incidence and mortality?
  
• Do dietary factors influence the incidence of premenopausal breast cancer in African Americans?
  

Environmental Exposures and Carcinogens
There is a paucity of studies investigating a possible link between environment and breast cancer. Identifying common environmental risk factors remains a primary barrier to conducting productive research. Conventional wisdom indicates that environmental chemicals (either naturally occurring chemicals, man-made chemicals, or by-products of man-made chemicals), genetic susceptibility (the inheritance of a particular gene as well as the inheritance of various susceptibilities that can be modulated by various environmental factors), and biologic agents (such as bacteria and viruses) may all play a role in the development of breast cancer.

Predefined questions discussed:

• What research methodologies can be used to correlate pesticide exposure and ethnicity on cancer type and incidence?
  
• What associations exist between pesticide or carcinogen exposure, metabolism, and ethnicity?
  
• Are there ethnic-related variations in the markers for pesticide or carcinogen exposure?
  

	CONCLUSIONS

TOP ABSTRACT INTRODUCTION THE IMPACT OF BREAST... UNDERSTANDING WHY DISPARITIES... CONCLUSIONS References

 
Although breast cancer research has resulted in significant advances, there is much work to be done to protect women from the threat of this disease.¹ Breast cancer is firmly entrenched on the national cancer research agenda because of its enormous impact on our society.¹ It is necessary to continue to define priority areas of research relevant to minority women with breast cancer, and to identify, on the basis of expert testimony and input and the literature, other priority areas, such as psychosocial and behavioral issues, survivorship, and quality of life.

Focused research will play a key role in improving breast cancer rates and outcomes in minority populations.² However, many factors must be taken into consideration. For example, efforts to include minority and medically underserved populations in clinical trials and efforts to provide these populations with information need to be addressed to bridge the gap between scientific innovation and improvements in health and health care delivery.²

Forums such as the breast cancer summit and the biennial symposium series are vital in the development of the breast cancer priority areas. It is critical for those who make policy to interact regularly with those who are affected by those policies.²⁶ Otherwise, we simply continue to collect data and identify issues while actually maintaining the status quo with little real progress.²⁶ It is paramount that the gap between discovery and application does not continue to increase for African American women who are currently and who will be affected by breast cancer.

	Acknowledgments

 
We wish to thank Lisa A. Newman, MD, Wayne State University and Karmanos Cancer Institute, for her help as cosponsor of the Summit Meeting Evaluating Research on Breast Cancer in African American Women and in the development of the summit discussion questions. We also wish to thank Richard A. Hajek, PhD, and Larry Laufman, EdD, for their valuable comments in reviewing this manuscript. Acknowledgment should also be given to the Intercultural Cancer Council (ICC) (www.icc.bcm.tmc.edu) for the valuable work of its members in the development of the ICC's Cancer Fact Sheets, updated through an educational grant from OrthoBiotech. These fact sheets were invaluable in the preparation of this document.

	Footnotes

 
L. A. Jones conceptualized the main and the supporting points from the summit and contributed to the writing of the paper. J. A. Chilton provided background research and wrote the paper.

Peer Reviewed

Accepted for publication December 9, 2001.

	References

TOP ABSTRACT INTRODUCTION THE IMPACT OF BREAST... UNDERSTANDING WHY DISPARITIES... CONCLUSIONS References

 
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2. Haynes AM, Smedley BD, eds. The Unequal Burden of Cancer. Washington, DC: National Academy Press; 1999.

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8. Portnoy B. Healthy people in rural America by the year 2000. In: Couto RA, Simpson NK, Harris G, eds. Sowing Seeds in the Mountains: Community-Based Coalitions for Cancer Prevention and Control. Bethesda, Md: National Cancer Institute; 1994:102–119. NIH publication 94–3779.

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