Invisible Women: adding insult to toilet queues

Aug 8, 2022

Hello my dear GFPs, it's been a couple of weeks...I've been trying to catch my breath following the end of the first season of podcast episodes before launching back into production for the next bunch of episodes hitting your streams from September!And then there's also the news I mentioned in the last newsletter but one. It's been taking up an awful lot of brain space. Any time I'm not spending on the podcast is being spent thinking about this. I'm sorry to be coy about this, I'm not ready to talk about it yet. I will, at some point in the future. But this is just to say it's there and it's taking up a lot of mind.And so, while this newsletter is not going away, I am taking a step back from regularly scheduled publishing. I'm not going to stop altogether, because I think this community is important. But with everything that's going on, something has to give, and I'm afraid I've realised it has to be this.I know some of you are very kindly paying a monthly sub to support my work and if you feel you need to cancel, I totally understand. We all are having to make cuts right now. I will keep on making the podcasts (which I hope you've been enjoying!) and I will still be publishing newsletters -- but it's not going to be every week and I'm not going to commit to a regular schedule. I know you will understand, because you are my wonderful community of GFPs and don't worry, I promise this is not goodbye. It's just...let's meet up a bit less often and I'll see you when I see you -- until things are on a bit more of an even keel.In the meantime, let's see what's up in our favourite world of data that does not exist for women...

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Gender data gap of the week

Chloe E. Bird @ChloeBirdPhD

In science, what is funded creates what is known. What could we know about diseases affecting women if we doubled investments in women’s health research, which has long been underfunded? Our study explored this question—with staggering results.

healthaffairs.orgDoubling NIH Funding For Women’s Health Would Yield Substantial Return On Investment | Health Affairs ForefrontThe US has a long history of generously funding research on diseases that predominantly impact men and underfunding research on diseases that predominantly impact women. We estimate that doubling NIH funding for research assessing women’s health would achieve substantial returns on investment.

This study presents a really interesting analysis of what we stand to gain from directing a teensy bit more research funding towards how women experience disease.

As GFPs know, the vast majority of medical research has been done on male bodies -- but as GFPs also know, we cannot take research that has been done almost exclusively on the male body and expect that it will work for women, because, well it doesn't. Here's an Invisible Women extract to set the scene:

These gaps matter because contrary to what we’ve assumed for millennia, sex differences can be substantial. Researchers have found sex differences in every tissue and organ system in the human body,10 as well as in the ‘prevalence, course and severity’ of the majority of common human diseases. There are sex differences in the fundamental mechanical workings of the heart. There are sex differences in lung capacity, even when these values are normalised to height (perhaps related is the fact that among men and women who smoke the same number of cigarettes, women are 20–70% more likely to develop lung cancer).

Autoimmune diseases affect about 8% of the population, but women are three times more likely to develop one, making up about 80% of those affected. We don’t fully know why, but researchers think it might be down to women being the child-bearing sex: the theory is that females ‘evolved a particularly fast and strong immune response to protect developing fetuses and newborn babies’, meaning that sometimes it overreacts and attacks the body. The immune system is also thought to be behind sex-specific responses to vaccines: women develop higher antibody responses and have more frequent and severe adverse reactions to vaccines, and a 2014 paper proposed developing male and female versions of influenza vaccines.

Sex differences appear even in our cells: in blood-serum bio- markers for autism; in proteins; in immune cells used to convey pain signals; in how cells die following a stroke. A recent study also found a significant sex difference in the ‘expression of a gene found to be important for drug metabolism’. Sex differences in the presentation and outcome of Parkinson’s disease, stroke and brain ischaemia (insufficient blood flow to the brain) have also been tracked all the way to our cells, and there is growing evidence of a sex difference in the ageing of the blood vessels, ‘with inevitable implications for health problems, examination and treatment’. In a 2013 Nature article, Dr Elizabeth Pollitzer points to research showing that male and female mice cells have been found to respond differently to stress; that male and female human cells ‘exhibit wildly different concentrations of many metabolites’; and to ‘mounting evidence’ that ‘cells differ according to sex irrespective of their history of exposure to sex hormones’.

(IW, pp.198-99)

This paper gives a very good example from cardiovascular medicine of how reliance on male data plays out in reality for women. So, historically, treating and screening for heart disease has been all about looking for and treating blockages, because this is how heart disease classically presents in men.

When the focus finally shifted to what was happening in women’s cardiovascular systems, a different reality emerged. Beginning in the 1990s, C. Noel Bairey Merz, MD, among other researchers, began interrogating the tools she had at her disposal, and the framework she’d been taught to apply to how the disease presented itself. In women, she was finding, the symptoms of cardiovascular disease were often less clear and more diffuse. She was searching for blockages in major arteries, but she wasn’t finding them. She was hearing a wide range of symptoms from her patients, from back pain to nausea, but she just didn’t have a framework that made sense of those symptoms. She also knew the statistics: Cardiovascular disease was the leading cause of death in women in the United States and, unlike among men, it was actually getting worse, not better, over time. Women had a higher mortality and worse prognosis after an acute cardiovascular event. Clearly, the existing diagnostics were missing something.

Merz threw out the old model and found that the sex differences in the cardiovascular system began right at the very beginning: from different gene expressions in sex chromosomes and hormones. She discovered that, in women, cardiovascular disease is much more a micro-vascular disease, so the blockages the tests would be looking for weren’t in the major arteries but in smaller arteries.

This was, obviously, a life-saving finding. Imagine what we could achieve if we made a systematic investment in women's health.

Well, we don't have to imagine, because the study authors have crunched the numbers on what would happen if the NIH doubled its funding for research assessing women's health.

This wouldn’t be hard to achieve. As a case in point, only 12.0 percent of the NIH funding on Alzheimer’s disease and 4.5 percent of that on coronary artery disease went to studies that specifically addressed how the disease plays out in women.

Just to interrupt here to remind GFPs that two-thirds of people living with Alzheimer's are female and that heart disease is the leading killer of women in Europe and the US. These male-skewed funding figures DO NOT MAKE SENSE IN THE CONTEXT OF THE IRL DISEASE BURDEN.

If an additional $288 million was invested to address questions about women with Alzheimer’s disease, we estimated that the ROI would be 224 percent. The ROI for additional investment of $20 million for research on coronary artery disease and women’s health would be 9,500 percent. And the ROI for investing an additional $6 million spent on researching rheumatoid arthritis in women would be 174,000 percent.

Focusing specifically on coronary artery disease, this is what that return on investment would look like on the ground:

our microsimulations show a one-time investment would save more than 15,000 years of life for women and 6,000 for men; eliminate nearly 31,000 years living with the disease for women and more than 10,500 for men; and eliminate nearly 6,500 years of lost productivity for women with coronary artery disease, and more than 2,500 for men. Finally, such an investment would add nearly 28,000 quality-adjusted life years for women, and almost 10,000 for men.

Final word to the study authors as I can't better it: