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The law mandating the inclusion of women in medical research turns 30. Where do we stand?

Knowledge gaps remain in diseases like lung cancer, Alzheimer’s and rheumatoid arthritis

  • Only 12% of federal funding on Alzheimer’s Disease goes towards women-specific research
  • Impact on taxpayers: Scientists must repeat experiments when data aren’t analyzed or reported by sex
  • Prior to the 1993 legislation, women of reproductive age were underrepresented in or banned from participating in clinical research for decades

CHICAGO --- June 10 will mark the 30-year anniversary of the U.S. Congress’ passage of the National Institutes of Health (NIH) Revitalization Act, which required the inclusion of women in federally funded research.

As a result, progress has been made in advancing women’s health over the past 30 years, but there are still knowledge gaps, especially in diseases or disorders in which women are disproportionately affected, such as lung cancer, Alzheimer’s disease and rheumatoid arthritis.

Nicole Woitowich, research assistant professor of medical social sciences at Northwestern University Feinberg School of Medicine, who studies gender parity in research, said biomedical research still lags far behind clinical research.  

“Even though women are included in clinical research, biomedical scientists still routinely fail to analyze data by sex and gender,” Woitowich said. “This is a stage when it’s vitally important, before drugs and therapies get developed.

“When we fail to analyze data by sex or gender, we are leaving half of our knowledge about human health and disease on the table. We have no way of knowing if certain treatments or therapies work better in one sex or the other, and, if so, how we can tailor them to improve the health of all people.”

To schedule an interview with Woitowich, contact Kristin Samuelson.

Woitowich also raised concerns for what this means to the American taxpayer.

“When scientists have to repeat experiments simply because data were not analyzed by sex or the data were not reported by sex, this comes at a price to our taxpayers, who fund the majority of biomedical research in the United States.” 

Genesis of the NIH Revitalization Act:

This legislation was in response to several decades of exclusionary practices in which women of reproductive age were underrepresented in, or in certain cases, banned from participating in clinical research. Righting course, the NIH Revitalization Act mandated the inclusion of women and established the NIH Office of Research on Women’s Health, which, to this day, ensures the nation’s research resources are adequately addressing the health and well-being of women.

Funding remains a critical issue

Women’s health is often underfunded. According to a report by Women’s Health Access Matters, only 12% of federal funding on Alzheimer’s Disease goes towards women-specific research. If this investment is doubled, the return on investment would be 224%, Woitowich said.

“Investing in women’s health is an economic imperative, it goes beyond just a scientific issue,” Woitowich said.

 Lastly, Woitowich suggested that women are key to advancing women’s health research.

“We know that women are more likely to consider and evaluate data by sex and gender,” she said. “Yet, women are underrepresented in the biomedical workforce, particularly in leadership roles. Until women occupy more positions of influence and change across biomedicine, women’s health will remain understudied, underfunded and undervalued.”