6479Xcov 11/4/05 8:30 AM Page 1 National Research Center 20 ANNUAL FOR WOMEN for Women & Families REPORT & FAMILIES 03 National Research Center for Women & Families 1701 K Street, NW, Suite 700 Washington, DC 20006 202.223.4000 www.center4research.org 6479X 11/4/05 3:26 PM Page 1 photo by Gwen Lewis Founded in 1999 as the National Center for OUR MISSION Policy Research for Women & Families, we are now the National Research Center for Women & Families. Our mission stays the same: to make research-based information a valuable tool for improving the lives of women, children, and families every day. Our Center is a unique blend of research and advocacy. We focus on the health and safety of women, children, and families. We gather, synthesize, and use medical and scientific expertise to improve programs and policies that affect people’s lives. We scrutinize research findings, conduct research ourselves, and mold that information to be useful and interesting to the public, the media, opinion leaders, and policymakers. We are dedicated to making a difference for adults and children across the country. 6479X 11/4/05 3:26 PM Page 2 02 MESSAGE FROM THE PRESIDENT come dominate public and political we translate complex research findings attention so thoroughly that more objec- to make them usable and interesting. tive voices and sources of information Then we work with the media to help can be lost. “get the word out” in order to help shape the public debate, while also pro- When that happens, the interests and viding our work directly to the public— photo by T.J.Popkin photo by needs of ordinary women and their fam- free of charge—through our Web site, ilies rarely become part of the discus- articles, publications, speeches, and TV sion. Consequently, programs and poli- and radio interviews. An enterprise that cies that could help improve their health strongly values collaboration, we share and safety do not get the support they our publications and information with deserve—and women, children, and other organizations, researchers, and Two thousand and three was an impor- families suffer. Our singular mission is to advocates. We coordinate and work with tant year for the National Center for serve as that missing, objective voice. As them to inform the public and to become Policy Research for Women & Families, a research-based center, we provide a meaningful part of the public debate including the decision to shorten our information based on facts, not ideology. on policy issues. name to something easier to say and We are non-profit as well as non-parti- remember.1 Beyond that, we made sub- san. We have no financial stake in the Our work has made a difference, protect- stantive and substantial advances in programs or policies we analyze. We rely ing adults and children from dangerous improving the health and safety of on scientific expertise provided by our medical products, warning pregnant women, children, and families, using highly qualified staff and our nationwide women to avoid risky food and chemi- research information that has implica- network of unbiased, well- cals, and improving legislation that tions for our daily lives. respected researchers. affects people’s lives every day. It would not have been possible without the won- It is amazing but true: our mission is Since its founding, our Center has derful support and encouragement of unique. Ours is the only national organi- become a strong, objective, and highly our Board of Directors, our National zation that has set out to make this kind sought-after voice of reason, a trusted Advisory Board, our talented staff, our of research-based health and safety infor- source of sound science and useful partners from other organizations, and mation understandable and useful to information for a broad audience. Policy- the generosity of individuals, organiza- families across the country. makers and policy analysts are one tar- tions, and foundations. Thanks to our get for our findings, through briefings, supporters, we continue to be a trust- We are an essential voice because sound hearings, meetings, conferences, and worthy source of information as well as science and accurate information can written materials. To fulfill our mission, an effective advocate for the health and help us in ways large and small. we also want to inform those who most safety of adults and children. Unfortunately, spin and sound bites tend need the information yet most often to shape social policies and programs. have scant access to the facts. Therefore, Diana Zuckerman, Ph.D. Experts with a financial stake in the out- 1 Although our name was not changed until 2004, this annual report uses our new name, the National Research Center for Women & Families. 6479X 11/4/05 3:26 PM Page 3 I am a 32-year-old high school math teacher and a father of two. I just saw a clip of your “ Early Show appearance about teens’ having breast augmentation and wanted to thank you for bringing your expertise to bear on the matter as a voice of reason. As a father of a very young woman and teacher of young women, I feel so distressed to see so many of them growing up in a world where attention to body image and "how their prom dress fits" is driving them to extremes that put them at physical and emotional risk. Anyway, I wanted to drop you a line to say thank you. It is a voice that all too often is not heard from in our society. It seems from your Web site, you spend your time on giving women a "lift" in much more important areas of life. Keep up your good work. ” Tommy V., Concerned Father and Teacher 03 PROGRAMS AND PROJECTS During 2003, the Center continued ongo- public education efforts to ensure that all treatment decisions, the meetings were ing programs to improve medical care breast cancer patients have the most an important first step in our public edu- for women with breast cancer, warn accurate and understandable informa- cation efforts for these widely misunder- families about the risks of dangerous tion about their treatment options. This stood conditions. Experts in the field rec- chemicals and medical products, help project began in December 2001 with a ognized the importance of these prece- children exposed to domestic violence, national, one-day working conference on dent-setting meetings, made possible by and meet the needs of blind adults and early-stage breast cancer, Using Research funding from numerous agencies of the children. We also launched projects to to Inform Patients of Breast Cancer U.S. Department of Health and Human decrease smoking among girls and Surgery Options, at the National Services (HHS)— the National Cancer women, and to reduce chemical expo- Institutes of Health (NIH). The confer- Institute (NCI), the NIH Office of sures that can harm pregnant women ence brought together nationally respect- Research on Women’s Health, the HHS and children. Here are highlights from a ed health practitioners, medical Office on Women’s Health, the Agency busy year. researchers, and patient advocacy for Healthcare Research and Quality groups to develop strategies to ensure (AHRQ), the Centers for Disease Control that women newly diagnosed with early- and Prevention, the Health Research and ‘Breast Cancer Patients Have Choices’ stage breast cancer are accurately Services Administration, and the Center Public Education Project informed about their options for surgery for Medicare and Medicaid Services. Each year, more than 150,000 women in and related treatments. the United States are diagnosed with early-stage breast cancer. Experts agree In September 2003, we organized a that for most cases of early-stage breast smaller, one-day working meeting on cancer, lumpectomy with radiation is stage zero breast cancer, conditions com- just as safe and effective as mastectomy. monly referred to as ductal carcinoma in Nevertheless, almost half the women eli- situ (DCIS) and lobular carcinoma in situ gible for lumpectomy undergo mastecto- (LCIS). The meeting, also at NIH, my. Many women are not even told that brought together a dozen of the foremost lumpectomy with radiation is an equally experts in these non-invasive and often safe option. Women without insurance, pre-cancerous conditions. Observers with lower income or education, living included cancer and policy experts from in certain regions of the country, with the National Cancer Institute and key older doctors, or using community hos- organizations such as the National pitals are especially likely to undergo Medical Association and the American mastectomies, even when they are eligi- Cancer Society. ble for less radical surgeries. By focusing on how research information During 2003, the Center continued its could be used to help patients make 6479X 11/4/05 3:26 PM Page 4 04 PROGRAMS AND PROJECTS The September 2003 meeting was funded they are not knowledgeable about their er, have one thing in common: They by a contract from the HHS Office on daily lives and whether they have the were not born blind. Rather, most lost Women’s Health (OWH) with additional services they need to be productive, self- their vision due to disease as they aged support from the NCI and the NIH sufficient, and happy. and have had to adjust to losing their Office of Research on Women’s Health vision in order to maintain independent (ORWH). At several national conferences in 2003, lives. This has serious public health we presented findings from our land- implications, which we discuss in a The Center used the success of these mark national study of men and women report completed and released in 2004. meetings to launch a public education who are legally blind, a study that start- campaign entitled “Breast Cancer ed in 2000.