Breaking Barriers: Celebrating 30 Years of the NIH Revitalization Act and Women's Health Research
Vineet Arora, MD, MAPP, has many titles: Dean for Medical Education at the University of Chicago, Herbert T Abelson Professor of Medicine, and renowned academic hospitalist among them. But on March 30, 2020, the only one that mattered was expectant mother.
Arora gave birth mere days after the world shut down due to the COVID-19 pandemic, and in a matter of months, she found herself exposed to some of the biomedical gender inequities that exist for every woman.
“I’m a professor and scientist, and my research concluded that pregnant and breastfeeding women were excluded from COVID vaccination studies. Why is it that we’re left to trial and error?” she asked. “When I received the vaccine, I myself became an experiment that day.”
Arora’s concerns are magnified by women’s experiences across the globe — both patient and professional. To further dialogue on this topic, the Northwestern University Clinical and Translational Sciences (NUCATS) Institute hosted a “Breaking Barriers” panel discussion on January 19 at the Chicago healthcare incubator MATTER. The event celebrated the 30-year anniversary of the NIH Revitalization Act and its impact on women’s health research. It was co-sponsored by the Institute for Translational Medicine (ITM) and University of Illinois at Chicago Center for Translational Sciences (CCTS).
We (came) together to discuss the advances that have been made and recognize the profound impact this policy has had on women’s health and biomedical research. However, we’re also here because we recognize there is more work to be done.”
NUCATS Executive Director Nicole Woitowich, PhD, moderated the panel, introducing the 1993 NIH Revitalization Act and its ramifications. The landmark legislation required women to be included in clinical trials and codified into law the existence of the office of women’s health research at the NIH.
“Today, we come together to discuss the advances that have been made and recognize the profound impact this policy has had on women’s health and biomedical research. However, we’re also here because we recognize there is more work to be done.”
Jan Schakowsky, a Congresswoman from the Illinois 9th Congressional District, provided opening remarks, highlighting the positive impact the act has fostered over the past three decades.
“For years, women have been underrepresented, particularly women of color, when it comes to research on healthcare. But thanks to the passage of the Revitalization Act, now 50 percent of the participants in research are women,” Schakowsky said.
While the legislation was a promising start, the biomedical research deficits persisting in gender healthcare are prominent — and disproportionate. Janice Phillips, PhD, RN, CENP, FAAN, assistant director of the Illinois Department of Public Health, joined via Zoom to discuss that while there is a gap in what we know about women’s research, there is a tremendous gap when those women belong to minority groups.
“We know that minority women remain underrepresented in all forms of research, especially when it relates to clinical trials. We still have a ways to go. We can celebrate today, but we certainly cannot rest on our laurels,” Phillips said.
Associate Professor of Medicine at the University of Illinois Cancer Center and President, CEO, and founder of Women in Medicine Shikha Jain, MD, FACP, agrees with Phillips that this knowledge gap is a major concern. She believes an increase in community advocacy endorsing clinical trial support has the potential to attain more inclusive benefits.
“Getting community members interested in clinical trials before they actually need one is so important. A lot of it is about trust. Patients who don’t trust us may not be interested in signing up for clinical trials,” Jain said.
Further, Jain acknowledged the reality that while children and adults are treated differently, men and women are often prescribed the same dosage of medications due to studies predominantly based on male physiology.
“We are doing a major disservice to 50 percent of our population when in 2023 the data we’re using is observational data, retrospective data, and clinical trials that did not include women,” Jain said.
Director of Research and Academic Affairs and Immediate Past Director of the Rush Heart Center for Women Annabelle Volgman, MD, FACC, FAHA, exemplified Jain’s caution in the context of cardiovascular clinical trials. Historically, heart disease was labeled a “man’s disease” because clinical trials only included men; this notion has stuck to this day. This is a concerning reality as cardiovascular diseases are the leading cause of death globally, regardless of gender.
“Before we realized that it led to terrible quality of life, we were mistreating women in the emergency room as they were told their symptoms were all in their heads. It was really a horrible period. I was a fellow and we didn’t know what to say to these women who were having positive stress tests,” Volgman said.
She attests that healthcare professionals must make a conscientious effort to acknowledge the distinctive concerns of women under their care to help ensure them a more favorable future: “For so long, we didn’t know what to do with women experiencing heart failure with preserved ejection fraction. We just balanced their diuretics and hoped for the best, but they lived terrible lives. We need to do better.”
Arora agrees, citing ignorance in gender research equity as an obstacle harming patients and biomedical professionals. This issue extends to equitable funding, as only 35% of NIH R01 grant recipients were awarded to women as of 2022.
“The data does not look good, and COVID has made it worse. Everyone needs to go home and ask themselves and their institution, ‘What are we doing to keep women in the scientific workforce?’ ”
Written by Alex Miranda
