Women’s health research is underfunded and under-researched. Now what?
It's time to make the gender health gap ancient history. But how bad is it? And how do we fix it now?
Wow, it’s been a while.
Back in 2020 I decided to start a newsletter because why not. I thought it was cool to focus on the good and bad impact of tech. I published 3 issues and then life happened and so did writer’s block.
Since I last wrote “Tech Bites” - the previous incarnation of this newsletter - I:
Co-founded and killed a startup in the edtech space
Did a stint in VC + wrote 2 micro angel checks (wishing for more money to invest atm)
Had the time of my life in Kenya meeting founders from East and West Africa building the future of industries
Got Covid, which then transformed into Long Covid (lucky me)
Currently figuring out where life will take me after the tech layoff drama of the past few months
So now that I’ve got some time to reflect and I’m feeling the itch to write, here we are. With a new format - say hey to long form essays and the occasional startup write up (might be interview or not). Whenever I feel like it.
Tech for good is still my jam 🍯 - but I’m particularly digging deep into: healthcare, future of work, emerging tech ecosystems, and web3 for good.
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Now that I’ve got that out of the way, today I’m writing about the state of women’s health research & how we might make it better.
I was 25 when I first heard the word endometriosis. I was in Paris - second semester of my master degree at Sciences Po - in the middle of exam season. And I somehow found myself staring at that word “endometriosis” in black on a discharge letter from a hospital where I had arrived 2 days prior in an ambulance. Fun.
My first reaction was: what the F is endometriosis? Never heard of it.
My second reaction? Googling the hell out of it and digging as deep as possible to find out what it was.
What I found was not pretty. But it explained so much. My crazy painful periods - the same ones that I had sought medical help for that were dismissed with some pain pills by doctors? Apparently that weren’t normal.
And I wasn’t alone. 1 in 10 cis women have endometriosis (trans men and non-binary and intersex people are also affected, but they are hardly ever included in research so we can’t know for certain how many of them have endometriosis). How long it takes to get a diagnosis? On average 7.5 years. But apparently women don’t just have to wait to get diagnosed for conditions that primarily affects them. “Women are diagnosed significantly later than men on average across over 700 diseases”. Why? There are many reasons including being medically gaslighted by medical providers. And don’t get me started on the healthcare inequality BIPOC women face. Black women are 3 times more likely to die in pregnancy and chilbirth than their white counterparts in the US. In the UK they’re 4 times more likely.
But if we have to dig deep for a reason why women are diagnosed later and experience health care inequalities, here’s one: there’s a fundamental problem with medicine. The discipline today rests on a foundation of research done almost exclusively on male bodies. Female bodies have been pretty much an afterthought in the past and they still are today. Women’s health is chronically underfunded and under-researched.
The science of the female body: underfunded and under-researched
How bad is it really? Pretty bad. But before I share some of the pretty atrocious numbers that will leave you asking “How is this possible in 2022?”, we need to take a step back to look at why research of the female body is so underfunded and under-researched.
Medicine has an original sin: seeing the male body as the default and reducing the female body to its womb and its hormones. Case in point: Women were not required to be included in clinical trials until 1993 in the US because, among other things, researchers “viewed women as confounding and more expensive test subjects because of their fluctuating hormone levels”.
That original sin still permeates in medicine to this day. Women are 50% of the population but when it comes to research more funding is allocated to diseases that primarily affect men in the US. The picture doesn’t look any better in the UK. There is 5x more research on erectile dysfunction, a condition that affects 19% of men, than on premenstrual syndrome, a condition that affects 90% of women. It doesn’t come as a surprise that this lack of funding and research translates into a limited understanding of female health. And that data gap has consequences felt across the entire healthcare value chain. Women are often dismissed, misdiagnosed, or told that it’s all in their head when they’re seeking medical attention. They are more likely to have negative side effects when they take medications. They die from heart attacks more than men in part because they are not given the same quality of care as men. The list goes on.
Fixing this problem is the right thing to do - after all why would you want to provide meh healthcare to 50% of the world’s population? And it stands to benefit not only women but other AFAB (Assigned female at birth) individuals - trans men, non-binary, and intersex people. But if arguments of the heart don’t appeal to you and you care about $$ more, investing to improve healthcare for women presents a massive opportunity. And some are already working to capture it.
The rise of women’s health startups as a solution to the gender health gap
Talk to most women and it’s glaring obvious that there’s a gender healthcare gap. Last summer I did exactly that: I chatted to a number of women living with chronic health conditions. Many had had to battle with healthcare systems that too often ignore women’s health concerns. It shouldn’t have to be this way.
Well thank God for women’s health startups. In the last 5 years+ we’ve seen a wave of femtech companies emerging, focused on providing better care for women, relegating the healthcare gap to the past, and taking a chunk of the massive $1t dollar women’s health market.
What are some of these startups? Here are a few examples:
Menstrual health focused startups. Think about Clue, the period tracking app and FDA approved digital contraceptive. It is one of the pioneers in the space having been founded in 2012 - Ida Tin, one of the cofounders coined the term femtech after all. (Side note: there are real privacy concerns when it comes to period tracking apps in light of the overturn of Roe v Wade in the US - worth keeping it in mind).
Holistic/general health startups. Think about Maven, a virtual clinic for women's & family health that became the first femtech unicorn following a $110m series D. Or Tia, a startup that has raised $132m to date to bring comprehensive whole person care for women.
Fertility + maternal health startups. Hertility, an at-home hormone and fertility startup that is an approved Care Quality Commission provider in the UK. Cayaba Care is improving pediatric care & maternal health outcomes for BIPOC women with its in-home multidisciplinary care model.
Specialist care providers focused on conditions affecting women. Bloomful is providing personalised, virtual, on-demand care for endo and PCOS patients. Or Vira Health that with its Stella app is supporting women through menopause.
And startups unlocking the power of information we’ve never had access too before now. Pretty cool examples of this: Juno Bio and Evvy, both focused on decoding the vaginal microbiome.
We have more startups tackling women’s health and we have more funding going towards them. In 2012 only $107m dollars went towards women’s health startups. 2021 saw $1.98b invested in the space.
If you want to see a good mapping of women health’s startups, Christina Farr at Omers Ventures has written an amazing post that maps the space. And so has McKinsey.
All the roads lead to the research gap though
You speak to a women’s health startup founder and chances are that they are thinking about research - how little of it there is, and what they can do to solve the problem to:
give their product an edge,
and advance science for all.
I love that all these founders are taking matters into their hands and they’re focused on producing their own research. After all we want healthcare that is science-based.
But a few questions come to mind:
Can we rely solely on venture backed companies to move the needle? Are their efforts going to be enough to close the gender health gap faster?
Should we allow governments to get away scot-free? Shouldn’t it be their job to give more funding to women’s health research?
How long is it going to take at this pace to get rid of the gender health gap? Another 100 years?
What models exist out in the world to help us bridge the gap ASAP - possibly before I’m dead, thank you?
How do we accelerate women’s health research?
The million dollar question. There are different steps that we can take (this is not a comprehensive list obvs).
We need more women in STEM. Initiatives encouraging and supporting women in STEM - like Stemetts and Girls in Tech - are doing a great job. But so much more can be done: the percentage of women researchers in the world in 2017 was 30%. Women working in STEM sectors accounted to 24.1% in 2019. Some years have passed since then so I’m hopeful that the data in 2022 will be better but we won’t magically see a jump to 40%. We can still believe in miracles though.
We need more women taking part in clinical trials and we need more sex disaggregated data.
Women’s representation in clinical research has increased but it still remains low, especially in phase I trials where it stands at around 22%. (Phase I trials = studies that focus on whether a new drug is safe). If we want to truly fix the gender health gap, more needs to be done to change that and at least get women “represented in trials in proportion to their prevalence in specific health conditions”.
Guidelines exist that either require or encourage pharma companies to provide sex disaggregated data . The FDA requires the “study of both sexes in preclinical vertebrate trials and…[the provision of ] disaggregated data”. But even when it’s a requirement, it is rarely enforced. And when it’s encouraged, it is rarely done anyway. Why this matters? If you’re not looking at sex as a variable, how may you identify if there are differences in how male and female bodies react to a particular new drug? (Well you can’t, Sherlock). Regulators should do more by offering carrots and sticks to those who fail to provide sex disaggregated data.
But ultimately we need more funding. Duh
Governments need to wake up and provide more cash. France is doing something about endometriosis by allocating funding to increase awareness, improve diagnosis and research the condition and identify better treatments. And so is the US with Congress passing an Endometriosis Research Funding Bill on March 2022. These are all steps in the direction but probably not enough to fundamentally accelerate women’s health research enough to significantly close the gap anytime soon.
Getting more individuals donating to research bodies. In Italy (my country) you can dedicate a percentage of your income tax to go towards a charity or scientific research body of your choice. It’s called 5x1000. Could we have a similar initiative in other parts of the world? 🧐
Could the promises of DeSci (decentralised science) actually make a difference here? We’re seeing blockchain-based funding models emerging to finance research through tokens/NFTs (non-fungible tokens). Molecule has made it easier to accelerate drug discovery research by making IP liquid and tradeable through its IP-NFTs . Vibe Bio is bringing together patients, scientists and investors to identify and fund the development of promising treatments to rare diseases, too often overlooked by pharma. A similar approach could be revolutionary for women’s health research. Imagine being a women’s health researcher who now has access to alternative funding opportunities beyond the grants that have historically overfunded men’s health research and left women’s health research behind. Cool deal. Maybe all we need is a bunch of DAOs focused on women’s health research 😊
(A/N: I’m probably going to be writing more about how web3 can enable women’s health research. If you want to read more about IP-NFTS check out this post by Molecule, and if you want to hear more about Vibe Bio check out this podcast episode by Not Boring)
My final $0.02:
Women’s health research = under-researched and underfunded. This has an impact throughout the healthcare value chain leading to a gender health gap that has real consequences to women’s lives.
We’ve got some cool women’s health startups working to bridge the gender health gap that exists because women’s health research is underresearched and underfunded.
We can’t expect startups to do it all. If we want to accelerate women’s health research among other things:
We need more women in STEM,
We need more women taking part in clinical trials.
But we really really need more $$$$ to fund women’s health research. More government cash can definitely help and so can making it easier for individuals to donate to scientific research bodies. But some new models leveraging blockchain are emerging that could really make a difference.
That’s it. Those are my thoughts about women’s health research (for now). Would love to hear yours 💃.
Thank you Enea Venegoni, Anna Vybornova, Benedetta Pini and Soo Min Hong for reading and giving me feedback. This essay wouldn’t be what it is without you ❤️
Until next time,
Always cheer for your adventure!