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How a data gap mispriced half of healthcare

Maryann Selfe traces how women were excluded from clinical evidence, and why the resulting data poverty sustains itself until capital breaks the cycle.

From thalidomide to a blanket exclusion

Maryann Selfe's argument begins with a piece of history most investors have never connected to their portfolios. Decades ago, thalidomide was prescribed to pregnant women for morning sickness, and many of their babies were born without limbs. The US regulator responded with a directive to exclude women of reproductive age from clinical trials. In practice, Selfe explains to Michael Macfarlane, that became a blanket exclusion of all women, and medicines were developed for a long period on evidence drawn largely from men.

The consequences surfaced gradually. Selfe describes the sleep drug Ambien, prescribed to men and women with insomnia. Women metabolised it differently and woke the next morning still drowsy, which made accidents and falls more likely, and manufacturers were asked to reduce the dose for women. In her words, women became real-life guinea pigs once medicines had already reached the public. Some drugs, she adds, had to be withdrawn altogether because of their side effects on female biology.

Policy did change. The NIH Revitalization Act of 1993 mandated that women be included in trials. Selfe argues in her book that a law is not the same as inclusion. Designing a trial that includes both sexes and stratifies results by sex adds complexity, which raises the burn rate and lengthens the timeline. Faced with that trade-off, sponsors still include fewer women than they might, and the result is a persistent gap in what medicine knows.

Data poverty as a self-reinforcing cycle

Selfe's most useful contribution for investors is to show why that gap does not close on its own. She traces a chain of dependencies. Without sex-specific data, there is no precedent. Insurers need precedent, so without it they do not build products, and companies developing solutions have no route to reimbursement. Without reimbursement the commercial case looks weak, and when the commercial case looks weak, capital does not follow.

So it's almost like this data poverty is a self reinforcing cycle.

— Maryann Selfe, Wealth Office

Macfarlane offers a comparison from finance. If half the data were missing, no one would consider the resulting prices objective. Selfe agrees, and calls the situation a structural mispricing, a systems design issue more than a healthcare issue. Systems designed incorrectly, she argues, create the conditions for a correction, and she believes that correction is in its early stages.

Culture reinforces the cycle. Many women, Selfe says, have been socialised to treat their pain as private, something not raised at a dinner party. If problems are not discussed, investors cannot model the demand, and without visible demand it is hard to say whom a product is for. She sees this changing as millennials and Generation Z reach midlife, the most health-seeking stage of life according to research she cites, and as menopause is discussed openly at work, in politics and online. She expects the shift to take a generation in some regions.

The cost carried in the working years

Selfe came to the subject through her own health. She has uterine fibroids, a condition she says affects up to 80% of women by the age of 50. It is not fatal, but it causes pain and fatigue, and the standard solution has often been a hysterectomy. She cites research indicating that a hysterectomy before 50 substantially increases the risk of cardiovascular disease, Alzheimer's and dementia, and notes that of roughly 600,000 hysterectomies performed annually in the US, fewer than 10% are for conditions such as cancer.

She found the same reliance on blunt instruments across most female-specific conditions, from endometriosis to polycystic ovary syndrome and adenomyosis. Most do not kill. They erode quality of life, and that shapes how she thinks about longevity.

And I would submit to you that actually optimising for the health span is more important than optimising for the lifespan. Who wants to live to 100 in chronic pain every day?

— Maryann Selfe, Wealth Office

The economic point follows. Citing McKinsey, Selfe notes that while women live longer than men on average, they spend about 25% of their lives in poorer health, and that this burden falls mainly between the ages of 20 and 60, at the peak of their productivity. The cost, she argues, is shared by families, health systems, employers through sick days, and the wider economy. For her, this was the moment the subject stopped being a women's issue and became a societal and economic one.

Health for all

Selfe prefers not to lead with the phrase women's health. Her example is cardiovascular disease, long thought of as a male condition, which she says is now known to be the leading killer of women worldwide, a fact many women are unaware of. The heart has receptors for oestrogen, and while the mechanism is not yet fully understood, learning more about it could improve diagnostics, prevention and treatment for men as well, since men also have oestrogen.

That logic is why she frames the field as health for all. She also finds it easier for investors to support, because it avoids the immediate question of where the demand is. Her picture of the destination is a young woman whose blood is matched to her sex, ethnicity and genetics before she is prescribed a contraceptive pill suited to her. Sex becomes the first layer of personalisation, and other layers build on it. In Selfe's view, the data gap that once mispriced half of healthcare is also the starting point for medicine that fits everyone better.