National Research Center for Women & Families
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History and Organization
The National Research Center (NRC) for Women & Families is a nonprofit organization based in Washington, D.C. that seeks to improve the health and safety of adults and children by providing research-based information to the public, policymakers, health professionals, and the media. NRC for Women & Families gathers, scrutinizes, and synthesizes medical and scientific information, translates it into language that is understandable to non-scientists, and explains the implications of that information for policies and programs. NRC was founded in 1999 by Dr. Diana Zuckerman, who is president of the organization.
NRC is a charitable nonprofit organization as defined by section 501 (c) (3) of the U.S. Internal Revenue Service code. It is nonpartisan and is supported through grants, contracts, and individual donations. NRC does not accept funding from drug companies or manufacturers of medical devices. In addition to being designated one of America’s Best Charities by Independent Charities of America, NRC’s Cancer Prevention and Treatment Fund is listed in the U.S. government’s Combined Federal Campaign (CFC#11967). Although focused on health issues in the United States, NRC’s president has testified in the Canadian Parliament as well as the U.S. Congress, and has been interviewed on documentaries and news media in countries around the world.
Programs and Initiatives
NRC disseminates information on a wide range of health and safety issues and maintains three Web sites, which receive more than one million hits each month. The Center’s main Web site is www.center4research.org. As part of its Web presence, NRC manages an electronic health hotline.
In addition to its work on a wide range of health issues, NRC is particularly active in two areas:
1) Cancer prevention and treatment;
2) Ensuring the safety of medical products.
Cancer Prevention and Treatment
In 2007, NRC created The Cancer Prevention and Treatment Fund as an umbrella for its activities and programs aimed at helping people lower their risk of getting cancer and at improving the quality of cancer treatment.[1]
The major goals of the Cancer Prevention and Treatment Fund are to educate individuals and policymakers about behavioral and systemic changes that would reduce the risk of cancer, use unbiased research findings to improve the quality of treatment for cancer patients, and improve screening technology and programs for lung cancer and other cancers that tend to be diagnosed in late stages. Survival rates for cancers are lowest when screening is inadequate to result in early diagnosis and treatment.
One of the specific goals of the Cancer Prevention and Treatment Fund is to improve the quality of care for breast cancer patients by reducing the number of medically unnecessary mastectomies (see mastectomy). NRC’s research indicates that this can be achieved by making sure women and health care providers have access to the most up-to-date information about treatment options. NRC developed a free, online continuing medical education course on breast cancer treatment for primary care physicians and other health professionals that was available on Medscape in 2008. NRC also focuses on cancer prevention and improving cancer treatment using the following strategies:
- Working with the U.S. Congress on legislation to ensure that federal programs and private insurance companies reimburse cancer patients for second opinions and only for treatments that are proven safe and effective.
- Distributing the free booklet “Surgery Choices for Women with Early-Stage Breast Cancer,” developed by NRC in collaboration with the National Cancer Institute, the National Institutes of Health, the Agency for Healthcare Research and Quality, and the U.S. Department of Health and Human Services.
- Developing free patient booklets for the most prevalent types of pre-cancerous breast conditions, DCIS and LCIS.
- Advocating for increased government funding to improve the diagnosis of lung cancer, the number-one cancer killer of men and women.
- Working with the U.S. government to reduce the exposure of children, pregnant women, and other adults to chemicals and substances that are linked to cancer, such as Bisphenol A, phthalates, and tobacco smoke.
In 2008, NRC was one of the nonprofit organizations that was most actively working to strengthen consumer safeguards in the U.S. Consumer Product Safety Improvement Act. Signed into law by President Bush in August of that year, the bill included a ban on phthalates in toys and other products intended for children. Phthalates are chemicals that affect hormones and have been linked to genital abnormalities and cancer in animals; NRC provided the scientific evidence regarding phthalates to Congress to support the ban. The law requires that toys be tested for safety before they are sold and that they be free of lead and six types of phthalates.
Ensuring the Safety of Medical Products
NRC staff have testified before the U.S. Food and Drug Administration (FDA) and other government bodies dozens of times, on issues such as the risks of Vioxx, informed consent in LASIK surgery, the ineffectiveness of over-the-counter cold and cough medication for children, the long-term risks of silicone implants, and health concerns about Bisphenol A in baby bottles and food containers. NRC is both admired and reviled for the watchdog role it plays with regard to the FDA’s approval process. NRC’s 2006 report, FDA Advisory Committees: Does Approval Mean Safety, provides a statistical analysis of the approval process for prescription drugs and medical devices and documents examples where FDA Advisory Committee scientists recommended the approval of medical products even when they expressed doubts about their safety or effectiveness.
NRC testified before the U.S. House of Representatives and worked with both houses of Congress to ensure that the U.S. FDA Advancement Act, signed into law in September 2007, included new safeguards and increased resources to strengthen the safety of prescription drugs and medical devices, and mandated a Government Accountability Office (GAO) review of the medical device approval process. The GAO report, published in January 2009, concluded that the FDA "has failed ... to subject some of the riskiest devices to a rigorous review mandated by Congress.”[2]
Despite her outspoken criticism of the FDA, NRC’s President Dr. Diana Zuckerman was appointed to the Board of Directors of the Reagan-Udall Foundation, a public-private partnership created by Congress in 2007 to help strengthen the FDA. Dr. Zuckerman was also one of the few non-FDA employees asked to contribute a chapter (“A consumer advocate’s perspective on medical device epidemiology and surveillance”) to Medical Device Epidemiology and Surveillance, a 2007 book on medical devices edited by FDA scientists.[3]
Reducing Health Disparities
Since its early years, NRC has provided information to health professionals and policymakers about how the lack of diversity in clinical trials contributes to health disparities that result in poor medical outcomes for African Americans, Asian Americans, Hispanics, and other minority groups in the United States. NRC has pointed out that the FDA is the only U.S. federal government health agency that does not require diversity in clinical trials. NRC has unsuccessfully urged the Congress and the U.S. FDA to require that companies seeking approval of their medical products test the safety and effectiveness of those medical products on diverse racial and ethnic groups, as well as men and women over the age of 65.
Other Health Issues
NRC also focuses on other health and mental health issues, including:
- Reducing childhood obesity
- Balancing work and family
- Dating violence
Coalitions NRC participates in:
NRC is an active member of The Patient and Consumer Coalition in the U.S.
Publications and the Press
Diana Zuckerman and other NRC staff have written numerous publications and academic articles.
Books, Book Chapters, and Reports:
1. Zuckerman, D. (2009) The Ethics of Inclusion and Exclusion in Clinical Trials: Race, Sex, and Age, In The Penn Center Guide to Bioethics (Eds: Vardit Ravitsky, Autumn Fiester, Art Caplan), Springer.
2. Zuckerman, D.M. (2007). A Consumer Advocate’s Perspective on Medical Device Safety. In Medical Device Epidemiology and Surveillance, S. L. Brown and D. Tavris (Ed.).
3. Zuckerman, D.M. (2006) FDA Advisory Committees: Does Approval Mean Safety? National Research Center for Women & Families.
4. Zuckerman, D.M. (2006) Decisions in the Dark. National Research Center for Women & Families.
5. Dudley, S. and Zuckerman, D.M. (2006) Unnecessary Mastectomies? American Breast Cancer Guide.
6. Zuckerman, D. (2005) Treat Your Body Well, in M. Burk (Ed.) 50 Ways to Improve Women’s Lives, Inner Ocean Publishing.
7. Zuckerman, D. M. and Dubowitz, M. (2005). Clash of Cultures: Women and Girls on TV and in Real Life. In Featuring Females, E. Cole and J.H. Daniel, (eds), American Psychological Association Press.
8. Zuckerman, D.M. (2004) Blind Adults in America: Their Lives and Challenges. National Center for Policy Research for Women & Families.
Op-eds:
Dozens of op-eds by NRC staff have been published in the Washington Post, the Washington Times, the Boston Globe, the Los Angeles Times, and in the New York Times syndicate and McClatchy and Knight Ridder newspapers.
NRC staff have been quoted and interviewed by a wide range of media including:
News programs and talk shows on public television, ABC, CBS, NBC, CNN, Fox News, MSNBC, CNBC, The Rachel Ray Show, National Public Radio’s All Things Considered and Marketplace, and other TV and radio programs across North America and Europe. NRC staff have been quoted in the New York Times, the Washington Post, the Wall Street Journal, USA Today, the Boston Globe, the Los Angeles Times, Detroit Free Press, Associated Press, Reuters, U.S. News and World Report, Time, Newsweek, McCalls, Glamour, Self, Seventeen Magazine, and dozens of other newspapers and magazines.
Board of Directors
George Thomas Beall, M.A. Wendy Elizabeth Braund, MD, MPH, MSEd Arthur L. Caplan, Ph.D. Pamela Gallin, M.D. Mary G. Hager, M.A. Nancy Hardt, M.D. Judith L. Harris, J.D. Alan Mendelson, LLD Sharon Scribner Pearce Omega Logan Silva, M.D. Susan F. Wood, Ph.D. Diana M. Zuckerman, Ph.D.
References
- ↑ Cancer Prevention and Treatment Fund
- ↑ [1] GAO. Report to Congressional Addresses. January 2009. Medical Devices. FDA Should Take Steps to Ensure That High-Risk Device Types Are Approved through the Most Stringent Premarket Review Process.
- ↑ Zuckerman, D.M. (2007). A Consumer Advocate's Perspective on Medical Device Safety. In Medical Device Epidemiology and Surveillance. S. L. Brown and D. Tarvis (Ed.).