The Birth of An Advocacy Organization
In 1989, Dr. Haseltine gathered individuals from medical and scientific organizations to meet in Washington, D.C. Those gathered agreed on the need for more women’s health research at NIH, but they also agreed that women’s health generally lacked sufficient research focus. From this discussion, the Society for Women’s Health Research was born (Box 43-1).
To validate its belief that the health of American women was at risk due to biases in biomedical research, the all-volunteer members of SWHR’s first Board of Directors worked with the Congressional Caucus for Women’s Issues and its Executive Director Leslie Primer and Congressman Henry Waxman (D-CA). They requested the Government Accountability Office (GAO) (then called the General Accounting Office) to study NIH’s policies and practices concerning the inclusion of women and minorities in clinical trials. The GAO report was released at an NIH reauthorization hearing in June 1990. It concluded that the NIH policy (NIH, 1986) announced in October 1986 to encourage the inclusion of women in clinical trials had not been well communicated or understood within NIH or the research community, was applied inconsistently across institutes, and only was applied to extramural research. The GAO report concluded that there was “… no readily accessible source of data on the demographics of NIH study populations” (U.S. GAO, 1990). So at that time it was impossible to determine if NIH was enforcing its own recommendations.
Haseltine found this to be a “tipping point” that spurred significant advocacy efforts that would result in major policy changes over many years. Throughout the advocacy work, the SWHR leaders sought evidence to support their initiatives. They used an Institute of Medicine (IOM) report that demonstrated federal funding for research in obstetrics and gynecology to be inadequate as the tool to garner additional evidence in the form of the GAO audit.