WOMEN OF COLOR HEALTH DATA BOOK NATIONAL INSTITUTES OF HEALTH NATIONAL OFFICE OF THE DIRECTOR ACKNOWLEDGEMENTS This data book was prepared by Wilhelmina A. Leigh, Ph.D. (Senior Research Associate) and Danielle Huff (Research Assistant) of the Health Policy Institute at the Joint Center for Political and Economic Studies in Washington, D.C. The authors gratefully acknowledge the institutional support of the Joint Center and, in particular, the “fresh pair of eyes” provided by Emily Murphy (Intern) who proofread a penultimate draft. Special thanks also go to the following people, who generously shared their resources for use in the book: Laura Castillo-Page, Aramidé Kazeem, Ernest Moy, Devon Payne-Sturges, Barbara W.K. Yee, and Kehua Zhang. W OMEN OF C OLOR H EALTH D ATA B OOK ADOLESCENTS TO SENIORS OFFICE OF RESEARCH ON WOMEN’S HEALTH OFFICE OF THE DIRECTOR NATIONAL INSTITUTES OF HEALTH FOREWORD This edition of the Women of Color Health Data Book Political and Economic Studies, which prepared this provides the most recent available information on dif- report, first published data on the health of minority ferent populations of women in the United States and women in its 1992 report, A Health Assessment of represents a much desired update on the health of Black Americans: A Fact Book, and has been among women of color. The first edition quickly became one the most effective organizations working to focus of the most popular documents requested from this our nation’s attention on these issues. office. In fact, the first run was depleted in less than The closing years of the 20th century were char- 6 months. acterized by increased attention to women’s health Originally published in 1997, and updated in 2002, issues, resulting in the establishment of federal offices, this third edition of the Women of Color Health Data programs, legislation, and policies to foster the study Book includes more information and updated sta- of women’s health issues and to promote the broader tistics. The standards have been revised to include inclusion of women and minorities in biomedical five minimum racial categories: American Indian or research. These changes reflect the recognition that, Alaska Native, Asian, black or African American, Native in order for the results of biomedical and behavioral Hawaiian or Other Pacific Islander, and white. Ethnicity research to be widely applicable, researchers and clini- is reported as either “Hispanic or Latino” or “Not cians must understand how cultural, ethnic, and racial Hispanic or Latino.” Whenever possible, the population differences may influence the causes, diagnoses, pro- labels and presentation of data in this volume conform gression, treatment, and outcomes of diseases among to the recent revisions to Statistical Policy Directive No. different populations, including women of diverse geo- iii 15, Race and Ethnic Standards for Federal Statistics and graphic locations and economic backgrounds. This Administrative Reporting. These revisions were issued data book will be of value to scientists, advocates, and for comment by the Office of Management and Budget policymakers in understanding the health status of (OMB) in the mid-1990s, and their final version guided women of color in this country in order to formulate the data collection in the 2000 Census. The new race/ policies and research priorities to improve the health ethnicity terminology was adopted by other federal of all women in the United States. entities by 2003. The challenge inherent in women’s health research This edition of the Women of Color Health Data is to establish a scientific knowledge base that will per- Book continues to support recognition of the impor- mit reliable diagnoses and effective prevention and tance of women’s health and, more specifically, the treatment strategies for all women, including those of role of culture, ethnicity, race, socioeconomic back- diverse cultural and ethnic origins, geographic loca- ground, geographic location, and other social and tions, and economic status. The ultimate goal is to economic factors as important contributors to health increase medical knowledge through sound science status. The expanded concepts of women’s health, and thereby to inform the development of policies and and therefore research, focus on the study and under- medical standards from which all women and men standing of women’s health as a reflection of the can benefit equally. Just as sex and gender constitute myriad of elements that contribute to the overall parameters that must be incorporated in the design of quality of women’s lives in the United States today. clinical research studies if the results of such research In 1985, the Department of Health and Human are to be widely applied through health care policies Services (DHHS) published the Report of the and interventions, so too must racial, ethnic, and cul- Secretary’s Task Force on Black and Minority Health, tural factors be taken into account in the design and which documented disparate disease prevalence, pro- implementation of research protocols. gression, and health outcomes, including excessively Over the past two decades, evolving scientific, pub- high mortality rates, for minorities from many condi- lic, and political perceptions have led to policies that tions that affect all segments of the U.S. population. mandate broader inclusion of both women and men Following that were many organizations both within of diverse backgrounds in clinical research studies. and outside the Federal Government to address the The need for a better understanding of if and how sex, health of minority women. The Joint Center for gender, cultural, and racial differences influence the WOMEN OF COLOR HEALTH DATA BOOK pathobiology, etiology, diagnosis, progression, treat- these groups; and that NIH initiate programs and ment, and outcome of diseases among different popu- support for outreach efforts to recruit and retain lations has also resulted in changes in research topics women and minorities and their subpopulations as and strategies. volunteers in clinical studies. While the guidelines Policies for the inclusion of women and minorities require inclusion, they also recognize that inclusion in clinical research funded by the National Institutes must be determined by science. Depending on the of Health (NIH) have their origins in the women’s scientific issues under study, not every investigation health movement. The publication of a report by the requires the inclusion of every minority group or Public Health Service Task Force on Women’s Health even, in some instances, both sexes. Most important, in 1985 prompted NIH to promulgate a policy urging researchers have the opportunity to gather informa- the inclusion of women in clinical research. Later, in tion on women and minorities when hypotheses are 1987, minority and other scientists at NIH recognized being formulated, thereby allowing for the variables the need to address the inclusion of minority popula- of gender, race, ethnicity, and socioeconomic back- tions. So, in a later 1987 version of the NIH Guide, a ground to be taken into account while studies are policy encouraging the inclusion of minorities in clini- being designed, and to design such studies, as appro- cal studies was first published. Following the release priate, to allow for analysis by sex and gender. of a 1990 General Accounting Office (now called the Although investigators are now required by public Government Accountability Office) report document- law to include women and minority groups as sub- ing problems with the implementation of this policy jects in clinical research, NIH recognizes that there are and the subsequent establishment of the Office of other barriers to overcome in recruiting and retaining Research on Women’s Health in September 1990, this women of diverse backgrounds as research subjects. inclusion policy was strengthened and expanded. Such barriers include the need for cultural diver- The NIH Revitalization Act of 1993 (Public Law 103- sity among researchers, closer relationships between iv 43) legislatively mandated the inclusion of women researchers and the communities to be studied, over- and members of minority groups in all research stud- coming significant logistical problems related to ies supported by NIH, thus superseding and expand- women’s roles as care givers and as salaried workers, ing previous policies. The resulting modifications to and an appreciation of differences in cultural beliefs the NIH guidelines on inclusion, published in March of potential participants. The Office of Research on 1994, require that women and minorities and their Women’s Health is addressing these barriers through subpopulations be included in all human subject a number of programs and activities, of which this research supported by NIH; that women and minori- report is just one. ties and their subpopulations be included in Phase III clinical trials in numbers adequate to allow for valid Vivian W. Pinn, M.D. analyses of differences in intervention effect; that cost Associate Director for Research on Women’s Health is not allowed as an acceptable reason for excluding National Institutes of Health WOMEN OF COLOR HEALTH DATA BOOK TABLE OF CONTENTS FOREWORD iii LIST OF TABLES AND FIGURES vii HIGHLIGHTS ix FACTORS AFFECTING THE HEALTH OF WOMEN OF COLOR Ethnic and Racial Heritage 1 American Indians or Alaska Natives 3 Native Hawaiians or Other Pacific Islanders 8 Native Hawaiians 10 Other Pacific Islanders 12 Hispanics or Latinos 13 Black