on research & resplendence

Why do we have countless treatments for baldness, but almost nothing for endometriosis — a condition that affects 1 in 9 girls and women? Why is Viagra a household name, while PCOS is something many young people only learn about through TikTok?

These aren’t just fun facts or weird quirks of medicine. They tell us something much bigger: research funding decisions shape whose pain gets studied, whose conditions get understood, and ultimately, whose lives get better. If something never makes it to the top of the funding list, it rarely makes it to the lab bench, the textbook, or the pharmacy shelf.

In this post, we’re going to unpack the story behind research funding — how history set up the imbalance, what the current picture looks like, why these gaps keep happening, and what needs to change. Because this isn’t just about statistics or policy. It’s about why so many of us still sit in doctor’s offices with pain that has no name, no cure, and almost no research behind it.

a short history on the “default”

For a long time, medicine treated one body as the standard: cis, male, usually white. Everyone else was “variation.” That idea did not come from biology, it came from convenience, safety worries, cost, and who had power in science at the time.

Here is how it happened, in plain language:

• Early trials often used only men. Researchers said female hormones would “complicate” results, and that pregnancy risk made inclusion too hard. It was cheaper and faster to recruit one type of participant and call it universal.

• Results from male-only studies were then applied to everyone. Textbooks, dosing guidelines, and “typical symptoms” were written from those data.

• Whole areas of girls’ and women’s health were sidelined. Period pain, endometriosis, PCOS, pelvic pain, and contraceptive side effects were treated as secondary or “too variable,” so they attracted far less study.

Policies started to change in the 1990s in the United States and other countries, when funders began requiring women and minorities to be included in publicly funded trials. More recently, labs have been pushed to study sex in animals and cells too, because differences start well before human trials. These shifts matter, but they are catching up after decades of imbalance, and many private or small studies still do not reflect real-world diversity.

What this “male-as-default” history has meant in practice:

• Symptoms were defined on male patterns. Classic heart attack signs were described from men’s data. Girls and women who presented differently were more likely to be missed.

• Drug dosing skewed male. When the “average body” in trials is male, side effects in girls and women show up later, in real life, not in the data that should have warned us.

• Pain research under-served. Period pain and pelvic pain were normalised or dismissed, so they were under-measured and underfunded. Less measurement means fewer grants, which means fewer answers.

• Narrow cohorts. Even when women are included, study groups are often not culturally diverse, and almost always cisgender. CALD communities and queer and trans people are rarely represented, so findings do not always translate well.

A simple way to picture it: imagine a health library where half the shelves are blank because no one wrote those chapters. When you go looking for answers on endometriosis, PCOS, or period pain, you find a few pamphlets instead of a full book. That is not your fault, and it is not evidence that your pain is small. It is evidence that the research map is incomplete.

The good news is that maps can be redrawn. Inclusion rules exist now, more journals ask for sex and gender analysis, and youth advocates are pushing funders to match money with real-world prevalence and impact. But history still shapes today’s choices, and knowing this context helps you understand why some conditions have a deep evidence base, while others make you feel like you are starting from zero.

If no one told you this background before, let this be your reminder. The gaps you have felt in clinics and classrooms are not in your head. They are in the way research was built.

the current picture: where the bucks go

So, where even are we now? Even after decades of change, research funding is still uneven. Some conditions get millions poured into them each year. Others, even if they affect huge numbers of people, are left scraping for attention.

Take endometriosis. It affects roughly 1 in 9 women and girls, yet the funding is nowhere near that ratio. In Australia, the National Health and Medical Research Council has only funded a small handful of endometriosis projects over the past decade. In the US, endo research receives far less money than conditions that affect fewer people but carry more “prestige” or profit potential. The result: diagnosis still takes an average of 7–10 years, and treatment options remain limited and often ineffective.

Then there’s PCOS (polycystic ovary syndrome), which affects about 10% of people assigned female at birth of reproductive age. That’s millions worldwide. Yet compared to conditions with a similar prevalence, PCOS gets strikingly less research attention. Many young people only learn about it by accident — through TikTok, YouTube, or a GP visit where it’s mentioned in passing. Imagine if a condition this common in men was still considered a side-note.

And menstrual health overall? Still stigmatised. Period pain, heavy bleeding, irregular cycles — these affect huge portions of the population, but the research is patchy. For decades, period pain was just labelled “normal,” which meant there was little incentive to study it properly. Normalised pain doesn’t attract funding.

Meanwhile, money flows to other areas. Conditions like erectile dysfunction and baldness have far fewer sufferers but massive pharmaceutical interest, because treatments are profitable. Lifestyle diseases like heart disease and diabetes also get large slices of the pie — which makes sense given their impact, but the imbalance becomes clear when you notice how much less “women’s health” receives in proportion to its reach and cost.

And this isn’t just about women vs men. CALD and queer health barely register on most research agendas. Studies rarely include participants from diverse cultural backgrounds, and queer or trans-specific health issues are often left out entirely. So even when research exists, it doesn’t always reflect the realities of the people who most need answers.

The big picture? Research isn’t distributed by fairness or prevalence. It’s shaped by stigma, economics, and old habits. And when money skips over certain conditions, that means fewer trials, fewer breakthroughs, and fewer doctors trained with the knowledge to actually help.

why this happens

If you’ve ever wondered why research seems to skip over the conditions that shape so many girls’ and queer youths’ lives, the reasons are frustrating, but also important to understand. It’s not because your pain doesn’t matter. It’s because the system was built with certain blind spots, and those blind spots have stuck around.

1. Stigma and shame
Periods, pelvic pain, sexual health, fertility – these have been treated as “private” or “taboo” topics for generations. When society labels something as embarrassing, funding bodies often follow suit. Endometriosis, PCOS, period pain: all pushed into the shadows because talking about them openly makes people uncomfortable.

2. Who decides funding
The boards and councils that decide which projects get money are still, more often than not, dominated by men, or at least shaped by traditional perspectives. Even with progress, old biases slip through. If the people in charge don’t see an issue as urgent or if they’ve been told all their lives that “period pain is normal”, that filters into what gets prioritised.

3. Profit over prevalence
This is a big one. Pharmaceutical companies fund research where they see profit. A new drug for baldness or erectile dysfunction? Huge market, big returns. A new treatment for menstrual pain? Seen as “niche” or “too complicated.” Profit becomes the compass, even when the map of suffering looks completely different.

4. System inertia
Once money starts flowing into certain fields, it tends to stay there. Cancer, heart disease, diabetes – these areas dominate because they’ve been invested in for decades, and researchers follow the funding. New areas like endo or PCOS struggle to break through, even though the burden is massive. It’s like a snowball effect: more funding leads to more results, which leads to more funding. Meanwhile, under-researched conditions remain stuck at the bottom of the hill.

The result of all this? A research system that doesn’t match the real-world picture of pain. Girls, CALD communities, queer youth. Whole groups are left out, not because their health doesn’t matter, but because stigma, profit, and old systems keep saying “not now.”

But here’s the truth: none of this is fixed in stone. Funding priorities are choices. And choices can be changed.

why it matters

It might sound like all of this is happening far away – research councils, funding boards, labs with equipment most of us will never see. But the truth is, those decisions trickle straight down into your everyday life.

On a personal level, the lack of research means your doctor might not even have the information they need to help you. That’s why endometriosis still takes, on average, seven to ten years to diagnose. That’s why so many young people hear “it’s probably stress” instead of real answers. Without research, doctors don’t have guidelines, schools don’t have proper health education, and you’re left piecing things together alone.

On a systemic level, the neglect costs everyone. Missed school days, lost work hours, hospital visits that could have been prevented. All of this adds up. Period pain alone accounts for billions in lost productivity worldwide, yet the funding doesn’t reflect that cost. It’s not just unfair, it’s inefficient.

On a cultural level, underfunding sends a message about what society values. When erectile dysfunction gets more funding than endometriosis, the message is clear: certain bodies and certain kinds of pain are treated as urgent, while others are pushed aside. For CALD and queer youth, the message can feel even sharper: if research rarely includes people like you, your needs are seen as optional, not essential.

That’s why this matters. It’s not just about science or statistics. It’s about whether your pain is taken seriously enough to be studied, understood, and treated. And right now, the gaps in research are part of the reason so many young people still walk out of appointments unheard.

what needs to change – ASAP.

If research funding is built on choices, then changing it means making different ones. And while it can feel overwhelming, there are real, concrete shifts that could make the system fairer, and make sure girls, CALD youth, and queer youth aren’t left waiting decades for answers.

1. Balance funding with prevalence and impact
Research money should line up with how common a condition is and how much it affects people’s lives. Endometriosis affects 1 in 9 – that’s not niche, that’s huge. PCOS impacts millions worldwide. Menstrual pain causes missed school and work on a massive scale. Funding should reflect that scale, not push it aside because it isn’t profitable.

2. Put diverse voices at the table
The people who decide what gets studied shape the future of medicine. If funding boards, universities, and pharma companies remain dominated by one perspective, the same blind spots will continue. More women, more CALD leaders, more queer and trans voices in decision-making means priorities that reflect real communities, not just old defaults.

3. Push through public pressure
Research priorities don’t just shift on their own. They change when people demand it. Campaigns, petitions, media stories, even young people speaking up all put pressure on governments and institutions. We’ve already seen this work: endometriosis has started getting national strategies in some countries because advocates refused to stay quiet.

4. Break the stigma with education
The more periods, pelvic pain, and reproductive health are treated as normal topics in classrooms and media, the less excuse funders have to dismiss them as “too awkward” or “too private.” Normalising conversation makes it harder for funding bodies to hide behind stigma.

At the end of the day, research is not just about microscopes and labs. It’s about what we as a society choose to value. And if enough of us insist that girls’ health, CALD health, queer health do matter, then funding priorities can shift. They have to.

aletheia’s reminder

Whose research gets funded shapes whose voices are heard. For too long, girls’ pain has been written in the margins, while other stories filled the pages. That silence was never proof that your pain was small — it was proof that the system chose not to look.

But choices can change. And change is already happening, piece by piece, as more young people, more CALD voices, more queer voices refuse to let their health be invisible.

Your pain deserves research. Your story deserves answers. And the more we speak, push, and question, the harder it becomes to ignore.

The shelves of the library are not finished yet and you have every right to demand your chapter be written.

Standing by you always,

The Aletheia Project

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Originally published by The Aletheia Project on Substack.