Taboo: race, sex, and medicine's bias

My Year Seven history textbook commenced with an introduction to race. In tones of sepia on the first page, it broke down all of humanity into four concrete categories (and I quote): Australioid, Caucasoid, Mongoloid, and Negroid. Even then, at an age when textbooks were the font of all knowledge (and before the age of instant Google-searches), I baulked at this introduction. Where did, for instance, native Americans, fit into these four categories? Were all people across the great swath of Europe swept into one single category? Where did North Africans fit in? Years before this I had been introduced to the famous John Lennon song, War is Over,  and chuckled over the concept of the "yellow and red one" because it reminded the ten-year-old me of Power Rangers. Little did I know that the famous botanist, Carol von Linneaus, had grouped humans into four varieties two-and-a-half centuries prior.  People of colour, then, was terminology harking back centuries to a time when humans were classified by a man famous for his understanding of plants.

Many would classify race phenotypically, though racial classifications have long been used to the benefit of those in the ruling class. The "one drop" rule long-applied to definitions of Black in America, and many states defined race by percentage, as if one's self-identity and health susceptibilities could be traced to being at least 1/32nd Black.  In medicine, we often ask patients their race as a surrogate marker for disease predisposition. Are you Mediterranean and therefore at higher risk of Gilbert's disease? Are you Aboriginal and at higher risk of diabetes? We forget that Black children are at risk of cystic fibrosis, even though medical school teaches us that it is a disease of Caucasians (the genetic variant affecting 70% of Caucasians with cystic fibrosis only affects 29% of those of African descent with the same disease) . And we are told that multiple sclerosis generally affects women who lived above the 37th latitude before age 12, as if men, and women born below the 37th latitude, are inherently unable to manifest this condition (incidentally, I cannot remember treating even one female patient with MS but I can distinctly remember treating at least as many male patients with MS as I have fingers).

In the 1950s, a loving and hard-working mother of five sought help from Johns Hopkins for what turned out to be cervical cancer. Despite suffering through difficult treatment, she ultimately lost her life to the disease. Her cells, however, went on to propagate in medical laboratories the world over. She lives on as HeLa, though her own life as Henrietta Lacks was cut short in 1951. She was a Black woman in Baltimore; subject to racial discrimination and segregation prior to the Civil Rights movement. Her cells helped lead to the development of a polio vaccine and be involved in countless research projects saving innumerable lives. The problem is that Mrs Lacks did not consent to her tissue being sampled, nor did her family, and they have received little recompense for their mother's role in changing science.

Women as a whole have been let down by the medical establishment over history. In the 19th Century, it deemed inappropriate for doctors (men) to examine or expose the female form. As a result, most medical students entered clinical practice with little to no understanding of childbirth or how to manage its complications. A vesicovaginal fistula was a serious and morbid complication afflicting women who had had obstructed labours, particularly affecting women who were malnourished, young and lacking in antenatal care. These women were more often immigrants or Black, and while this condition is not in itself fatal, it was a one-way ticket to an emotionally impoverished existence as the woman was shunned for their unpleasant odour from constantly leaking urine. A cure was found, however, through the work of gynaecology's founding father, Dr JM Sims. He searched amongst slaves in the area and found seven women with this condition. There was a dichotomy where he felt the ability to practice and seek cure through experimentation on these women without granting them the same human capacity for consent, or treatment with anaesthesia or analgesia that might be afforded white women of the time. These women underwent multiple, often unsuccessful, procedures that, when attempted on their white contemporaries, were aborted due to insufferable pain.

Modern medicine may not rely on experimental surgeries on enslaved women but it still discriminates. Back in Year 7, I remember coming to school one day and finding my friend Annie hadn't come in. Odd, I thought, because she hadn't been at all unwell the previous day. And again, the next day, she wasn't there. One of her other friends had called the house and found out she was staying home because of period pain. Period pain?! I was baffled. Is that a thing? As a life-long little-sufferer, I've found it hard to grasp how terrible this pain must be for my fellow women. The first time I ever experienced period pain, so shocked by the unexpected, severe, debilitating pain I was experiencing, I called a friend who ran me through my symptoms. Then a fourth-year medical student, it took the clinical acumen of my pilot friend to diagnose my condition. Twelve years after Annie took two days off school for period pain, I finally understood what she was going through. Endometriosis, a condition affecting up to one-in-ten women, causes excruciating abdominal pain to the degree where women cannot attend work or study. It affects their fertility. It can be difficult to diagnose from routine tests and imaging studies alone. And so many women are misdiagnosed, or labelled as histrionic, and thus undertreated, for years. There is an odd and intractable belief in medicine that pain should just be tolerated - even though we know people cannot work, parent, or live a fulfilling life when they are constantly suffering. When a patient presents to the Emergency with severe pain, they will receive analgesia. But when a barrage of tests does not reveal a diagnosis, or when that patient is seen on the medical records to present recurrently with the same problem, these patients are often seen as attention-seekers, drug-seekers, or mentally-ill. I've heard countless colleagues label these patients as "weak" (or worse) and sent out the door with advice to take paracetamol and ibuprofen and to go see a specialist in a few weeks. This is not just for endometriosis; the same applies for chronic pain of any sort. The hubris of medicine - the belief that we can diagnose everything, and if we can't diagnose it then it mustn't be real - lets down both these patients and the community. We forget the old maxim - cure sometimes, treat often, comfort always.

Some of the problems in treating women in the health system boil down to how we do research. For many years, research was undertaken on the young and the fit. Subjects were found in the halls of universities, ripe with healthy participants who might be keen on a free meal or movie voucher for their time. And, to state the obvious, for a long time universities were mostly populated with young men. Even now, research is often undertaken on those who are fit, without significant medical diagnoses, and who are under the age of 65 and not pregnant. Which means, of course, that questions arise as to the validity of applying research findings to women, particularly those who are pregnant, or the elderly, who often take multiple medications for their many chronic conditions. We know that women present differently to men when experiencing coronary artery events. And we know that their outcomes are different. New evidence demonstrates that more women than men will demonstrate cardiac ischaemia without evidence of coronary artery disease on angiogram, pointing towards a potentially sex-based difference in the pathophysiology of the disease. Angiography, the gold standard of diagnosis, and which leads to revascularisation with coronary artery stenting, may not be such a gold standard when it comes to treating women. Coronary flow rates are demonstrably different and it is thought that this sex-based difference is due to variation in the formation of atherosclerosis. In research and on the clinical floor, we need to be aware that women and men are equal but different.

It is not just women who lose out in the research games. Genetics research is populated mostly by people of European ancestry, which means our banks of knowledge provide clues to treating Caucasians but may not be validated in those of other ethnicities. We known African American men die twice as often as white American men from prostate cancer, but is that due to inherent genetic differences, access to healthcare, health literacy, fear of seeking help or other factors? Is prostate cancer in African American men intrinsically different, intrinsically more deadly, or is it that we are not seeing it or treating it as aggressively? A commonly used antiplatelet drug, clopidogrel (clo-pid-o-grel, not clo-pi-dog-rel) is a pro-drug, meaning it needs to be metabolised to the active drug. Unfortunately for 14% of Han Chinese folks, the enzyme (CYP2C19) is a poor metaboliser, rendering the standard drug dose ineffective. Despite this being in the medical literature for years, I've only noticed a change in clinical practice this year, seeing more patients prescribed an active drug such as ticagrelor. Additionally, there is no routine CYP2C19 testing for those patients who may need an antiplatelet drug. If personalised and precision medicine is to be our future, it must first cater for all the different representations of humanity.

In medicine as in so many aspects of the world, there has been a convergence of research to what is white and male. In part this is a blindness inherent in Western medicine, and the long history of male physicians. In part it is a hold-over of the colonial age where Western nations saw themselves as superior to others, to the extent of starting opium wars, introducing slavery, and declaring Australia terra nullius in spite of an obvious Indigenous people. Until medicine and science recognise that we are all equal but different, we all suffer. Medicine that underserves women costs us in lost productivity and emotional and physical suffering. Medicine that ignores ingrained racism fails to meet the needs of often vulnerable populations. Medicine that treats unknown conditions as over-reacting patients fails to provide care, comfort and solutions for people in need. Our bodies are different; our need for appropriate and careful treatment is the same.



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