Boobs and Tubes: The data gap – Why medicine just loves women

As the pandemic – and lockdown – rumbles on, we need as many reasons to celebrate in 2021 as possible. Lucky then, that March 8^th is International Women’s Day, celebrating 50% of the world’s population. This year, as with every IWD, there’s a theme, and 2021’s is fabulous: #choosetochallenge. It’s a theme that dares us to really look at the way those who identify as women live, work, and love in modern society. But this piece isn’t about the likes of Sandi Toksvig, Kamie Crawford, or Queen Bey, inspirational though they are. Instead, we’re going to talk about the data gap, while celebrating ordinary women and our lifelong battles with the medical profession.

Ladies, let’s talk healthcare.

Before we do too much celebrating though, let’s be real. Women have been ignored by medicine for over a century. There’s a chronic shortage of medical knowledge and clinical research specifically for and about women, along with an enormous funding deficit. And that’s a situation we all unknowingly spend our entire lives dealing with. Bear with us here, it is going to get a bit depressing. But just for a little while.

Ordinary women and medicine

Despite our best efforts, there’s a stereotype we just can’t shake with regard to XY chromosomes. You know the one. Men remain stoic and brave in the face of pain and disease, while women are hysterical, emotional, and bored. And there’s factual evidence to back up this treatment shorthand. Women are more likely to be prescribed sedatives over pain medication when they’re in pain. Translation: your doctor doesn’t believe you. What about the decade-long fight many women face getting an Endometriosis, Polycystic ovary or even Menopause diagnosis? There’s a reason for that.

Admittedly, things are slowly beginning to change in women’s healthcare. But the collective medical ignorance of women’s bodies goes back millennia. You might be in a forgiving mood, though, and say that science has come a long way from humors and phlegm. We might even say you have point. But the assertions that women are weak, hysterical, emotionally imbalanced baby machines are thousands of years old. And they still don’t seem to have gone away.

Women and medicine throughout time

Pick any period between Ancient Greece and today and we’ll show you some horrific theories about women’s bodies. Back in Medieval times, women were considered “leaky vessels” or good old-fashioned witches. How about one of the most fetishized ages of recent history: the Victorian era. Ah, the dresses. The glorious furniture. The locking up of any woman who wanted to read/vote/not be property on the grounds of “mental illness.” Good times.

Even in the latter half of the 20^th century, women were still considered a different sort of man, rather than a sex in their own right. Or, as Dr Alyson McGregor put it in her book Sex Matters, women were “men with boobs and tubes.” And, perhaps because the effects of pregnancy can be visible and long-lasting, much of women’s health care has focused on fertility. The medical profession has even given it a rather patronizing nickname: Bikini Medicine.

Women, the data gap, and healthcare today

Outside of the realms of Bikini Medicine, healthcare continues to persist with the Women Are Men Really standard. Award-winning author Caroline Criado Perez — she of the fantastic Invisible Women — calls this reference model the Default Male. And he is everywhere. From PPE to anti-morning sickness medication, the Default Male is used to test everything. EV.ER.Y.THI.NG.

Some examples…

Thalidomide

Despite the enormous amount of evidence proving men and women react differently to everything, the Default Male remains the gold standard. Ready to be completely baffled? Thalidomide — that horrific anti-morning sickness drug that damaged thousands of fetuses — was almost entirely tested on men. You know, because men notoriously suffer from regular bouts of morning sickness.

Ambien

If you’ve ever taken Ambien, get ready for a shock. You’ve probably driven a car waay over the safe drug limit. How? Well, the sedative, as you may have guessed, was also mostly tested on men. But women metabolize the compound more slowly than men, which means any dose based on a man’s metabolism is way too high. So, taking the prescribed amount left many women essentially stoned and in charge of a vehicle the next day. You can probably fill in the rest.

Clinical trials and the data gap

Eye-opening incidents like these have, finally, led to more awareness that clinical results need to be separated by sex. Disaggregated data is necessary. Fact. But large parts of the research community are resistant to even including women in studies, hence the data gap.

And we’re talking 21^st century here. Two such trials, highlighted by Perez, claimed to cover “adults” and “people.” One looked at the dehydration effects of regular coffee, the other the effects of pizza on blood sugar. No, we’re not kidding. And yes, they completely forgot to include any women. At all. Because of periods. The data gap isn’t so much a gap as a gaping chasm.

#ChooseToChallenge

Now, we didn’t bring you all this way just to depress you. The good news is, things are changing. Some fields of medicine are heading toward more tailored therapies that will have to take sex into account. But like anything that’s been around for millennia, it’s going to be slow going. For a start, there still aren’t enough female physicians. Added to that, re-educating an entire profession about the female anatomy may take a while.

So here’s where #choosetochallenge comes in. Start a conversation with your doctor about who your medication was tested on. Let them know we’re paying attention. Make a nuisance of yourself if something isn’t right. Change your doctor if they don’t listen. Because changing women’s healthcare will challenge every single one of us. And one day soon, our hard-won personal battles will mean better healthcare, not just for women, but for everyone. And that’s something worth celebrating. See, we’d told you it’d get better.