The $20 Billion Question: What Counts As Women's Health?

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The strategy's $4 billion data pillar aims to fix the gaps in women's health data before the next generation of diagnostic tools is trained on them.

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The American Heart Association endorsed a women's health framework this month. So did the Lupus Foundation of America, the Arthritis Foundation, the National MS Society, UsAgainstAlzheimer's, the COPD Foundation, and Prevent Blindness.

That list should stop you. Cardiology, rheumatology, neurology, pulmonology, and ophthalmology signed onto a document about women's health. In all, 37 organizations endorsed it. Either they wandered into the wrong room or the room is bigger than anyone had acknowledged.

The document is the National Strategy to Close the Women's Health Gap, released July 15 by the American College of Obstetricians and Gynecologists, the Society for Women's Health Research, and the Women First Research Coalition. It asks Congress for $20 billion over a decade.

But the number isn’t the argument. The argument is that women's health has been filed as a specialty for 30 years, and that the filing is a reason the money never came.

It's Not Just Reproductive Care. It's Nearly All Of Medicine

The women's health gap is the shortfall in research, data, and clinical evidence for conditions that affect women uniquely, disproportionately, or differently. Most people hear the phrase and think of obstetrics. The coalition is betting everything on convincing Congress otherwise.

"The women’s health gap extends far beyond what we consider to fall under the scope of obstetric and gynecologic care," Rachel Gandell Tetlow, ACOG's vice president of government and political affairs, explains. "It extends to nearly every facet of the healthcare women receive and the research that is guiding that care."

She pointed to a specialty unrelated to her organization's namesake: "We do see these effects of the women's health gap showing up in other specialties of medicine, such as cardiology, for example."

Sandra E. Brooks, MD, MBA, FACOG, ACOG’s chief executive officer and a gynecologic oncologist, was blunter at the July 15 launch. "This should not be a niche issue," she said. "It should be a national priority."

The arithmetic is on her side. "More than two thirds of Alzheimer’s disease patients are women," Schubert told the crowd. "Women account for the majority of autoimmune disease patients." UsAgainstAlzheimer’s and the Autoimmune Association are both on the endorsement list.

The framework's organizing concept is sex as a biological variable, a term the National Institutes of Health has used for a decade. It means sex isn't a demographic box to check. It's a factor that shapes how disease progresses and how drugs behave, in every body, in every specialty.

Erika Miller, Washington representative for the Women First Research Coalition, which has 16 member organizations, framed the vocabulary as plain scientific accuracy. The concepts, she noted, are "well-established concepts used by NIH and the broader research community to improve study design, data analysis, and clinical care." Then she named the destination: More research on how biological sex influences disease "will move the field closer to truly personalized, precision medicine for everyone."

Precision medicine is a category investors already understand and already fund. The strategy is quietly arguing that women's health has been sitting inside it the whole time.

Half The Population. Under 9% Of The Research Money

Just 8.8% of NIH research spending from FY2013 to FY2023 went to women's health research, and the share fell even as the agency's budget grew, according to the National Academies of Sciences, Engineering, and Medicine. Miller says that the trend line is what the coalition built on. The framework, she explained, was constructed around the evidence "that NIH investment in women's health decreased over the 10-year period from FY 2013 through FY 2023, even when NIH's budget grew."

Here's why the classification matters. If women's health refers to obstetrics and gynecology, then 8.8% is roughly what a specialty typically gets. The budget looks unfair but defensible, and the market looks small enough that capital's caution reads as rational.

Reclassify it as sex differences across all of medicine, and the same 8.8% becomes something else entirely: a mispricing. Half the population, and a research portfolio sized for a subsection.

The World Economic Forum and McKinsey Health Institute put the opportunity at $1 trillion in annual global economic value by 2040, driven by the finding that women spend 25% more of their lives in poor health than men.

Representative Rosa DeLauro (D-CT-3), ranking member of the House Appropriations Committee, ran that math in reverse at the launch. Failing to close the gap, she warned, "would cost the United States hundreds of billions of dollars in lost growth annually."

No villain is required for this story, which is part of its power. A category that gets misfiled gets underfunded by ordinary institutional logic. You fund a specialty at a specialty scale.

Kathryn Schubert, SWHR's president and CEO, is explicit that federal dollars aren't meant to substitute for private ones. The strategy, she said, "is meant to work with private and philanthropic investment to create the structural change that will allow new investments to scale up." Her pitch to Congress skips grievance altogether: "Investing in women's health research is an investment in American competitiveness and success."

When The Evidence Is Missing, Someone Else Fills The Void

There is a second cost to the shortfall, and Brooks named it from the podium. Gaps in knowledge and options, she said, "have created space for misinformation to flourish, and women increasingly turn to social media influencers in unproven treatments because they’re desperate for information and relief."

"Too often, others profit from that uncertainty," Brooks added. "When the research and evidence is lacking, misinformation fills that void."

That void is a market, and it is already being served. The wellness industry monetizes the same uncertainty the research never resolved. Reclassification is not only about who gets funded. It is about who gets to answer the question when a patient goes looking for one.

The Five Data Pillars Are Where This Gets Urgent

The strategy splits its $20 billion across five priorities: research and innovation, regulatory coordination, workforce, public awareness, and data.

The data and evidence infrastructure line, at $4 billion, has drawn the least attention and may matter most. It funds common data elements, a public-private partnership on midlife health data, and a fix for the NIH's own broken system for tracking its spending on women.

Schubert connects it to the tools currently being built. "AI has great potential, but not if the systems are built on outdated data or technology," Schubert cautioned. The pillar exists, she added, to bring together data from public and private sources "so that we can avoid the mistakes of the past."

The stakes are simple. If sex operates as a variable across all of medicine, the datasets that train the next generation of diagnostics need to encode it now. Otherwise, the misfiling gets hard-coded into tools nobody can audit later, and the gap stops being a funding problem and becomes an engineering one.

What 1993 Teaches Us About Whether $20 Billion Works

Congress has tried this before. The NIH Revitalization Act of 1993 required that women be included in federally funded clinical research, and both the coalition and Schubert anchor their case to it.

Vivian W. Pinn, MD, the first full-time director of the NIH Office of Research on Women’s Health, lived the aftermath. "We had to explain what women’s health was to so many people," she recalled at the launch. "They say, ‘What is women’s health? Why is it important?’" Her office opened with an $800,000 appropriation. In that first year, she said, there was "absolutely no research on uterine fibroids or endometriosis being funded by the NIH as common as they were."

Thirty-three years later, 61% of NIH-funded studies include both sexes, but only 44% analyze or report their results by sex. The mandate worked on paper and stalled in practice, because 1993 solved for representation when the problem was classification. Inclusion turned out to be necessary and insufficient.

That history is the sharpest test of this framework, and the coalition seems to know it. "It is clear that marginal investment is not going to close the women's health gap," Schubert argued. Miller defends the decade-long horizon on the same grounds, describing it as "a sustained commitment that allows federal agencies to build capacity rather than a short-term initiative."

There is at least one data point suggesting the reframing travels. DeLauro said Congress this year negotiated a bipartisan bill boosting the Office of Research on Women’s Health by nearly $30 million, a 40% increase, "and we did so with a Republican majority in the House, in the Senate, and a Republican in the White House."

The real question isn't whether Congress writes a $20 billion check. It's whether the tracking, the data standards, and the accountability plumbing that 1993 never had can finally move the money to where the biology actually is.

Pinn’s office started with $800,000. The ask on the table is $20 billion. She framed the stakes generationally, hoping "our children and grandchildren will be talking about what happened in 2026 to make a difference for the future."

Get the classification right, and the funding follows. Get it wrong again, and in 2059 someone will write this same story with a bigger number.

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