Endo and Race
Throughout this year the issues of systemic racism have once again been brought into the spotlight. These issues resonate into every facet of society, including healthcare and so will no doubt affect the way in which people are treated when seeking medical help for conditions such as endometriosis.
This blog post is going to cover the published scientific research into endometriosis and race, however at the end of the post I will be including several links to other articles that discuss peoples’ personal experiences with regard to how race affects the many aspects of living with endo.
Before we go into the specifics of endometriosis though, we need to talk about the problems of defining race in medical research. The idea of ‘race’ itself (particularly in the field of medicine) is deeply problematic and vague as it assumes that everyone categorised into that race are biologically and socio-economically identical. For example, I happen to be White and British, does this mean I have the same risk of say, colon cancer, as a White person in France? Or Norway? Or Canada? Or Russia? The data suggests not, with men in Norway and the UK having much higher rates than Canada and Russia. Furthermore, would my risk be the same as Black or Asian man living in those same countries? Unfortunately the research isn’t definitive, but is suggestive that Asian people have a lower rate of colon cancer than whites in the UK, for example. There again though, the term ‘Asian’ is difficult to interpret, as in the UK, it encompasses Indian, Pakistani and Bangladeshi people who are ethnically and culturally diverse. However, in the US ‘Asian’ more commonly refers to people from China, Japan and Korea, so even the language that we use to describe race is inconsistent in its definitions.
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As a further example, the rates of different cancers vary widely over the entire continent of Africa, yet all of the dark skinned people living there would be classified as ‘Black’ by current medical definitions and thus would be given the same cancer risk if race was used as the only factor being examined. Race is therefore not a clinically relevant biological factor, and instead serves as an indicator of possible shared genetic, cultural and clinical characteristics. Obviously there is much, much more to say on the topic of race and medicine. However, I am by no means an expert and would encourage anyone interested in the subject to seek out literature on the subject. A few articles to get started on are
The use of Racial Categories in Precision Medicine (link)
Science reflects history as society influences science: brief history of "race," "race correction," and the spirometer (link)
The spectre of race in American medicine (link)
What are some of the reasons we see differences in certain disease risks in different populations? There are a few answers to this
- Lifestyle behaviours such as diet, exercise, smoking, alcohol and drug use, exposure to environmental hazards, like sun exposure, or pollution
- Socioeconimic factors such as education, household income, access to healthcare and cost of healthcare
- Genetic factors: these include genetic risks to certain diseases passed down through families and small genetic mutations that appear more often in certain populations. In this case of endometriosis there may be genetic differences that are common in all populations. For example, some studies suggest certain genetic differences are shared in women with endo from European and Japanese populations. However, no one knows if these genetic markers are present in Black populations, because the research simply hasn’t been done.
- Culture, such as practices and beliefs that may alter the way in which a person discusses their health with family/friends/healthcare professionals or may prevent them from seeking screening due to cultural taboos
All of the above factor into risks for any medical condition. Endometriosis diagnosis is particularly influenced by the cultural aspect due to it being a reproductive and menstrual disorder, the discussion of which in some cultures is suppressed or misrepresented.
Actual empirical evidence describing differences in endometriosis by race or ethnicity is scant to non-existent, so for this blog post I will be focussing on two papers published on the subject – Firstly ‘Influence of race/ethnicity on prevalence and presentation of endometriosis: a systematic review and meta-analysis’ which you can read for free here. And ‘Behind the Times: Revisiting Endometriosis and Race’, the abstract for which can be found here, but the full article is behind a paywall (if you know someone at university or college they may be able to access this article for you through their institution).
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The authors of these papers highlight that endometriosis was historically considered to be a disease of middle class, employed women who had delayed childbirth as perpetuated by many doctors, but particularly by one Joseph Meigs. Specifically, this notion referred to White. middle class, employed women. Lower class White women were considered to be less at risk of endometriosis, but so were all non-white women regardless of social status. This idea rested on endometriosis and childbearing being intrinsically linked and that non-white women were naturally more fertile.
Meigs’s idea of endo preferentially affecting affluent White women came from his observations that women in private hospitals were more often diagnosed with endo than women in standard wards. It is quite remarkable that he had not considered that private patients receiving the highest standard of medical attention would be more likely to receive a diagnosis. These beliefs did not go without challenge though, with several other doctors conducted studies showing Meigs was wrong. However, the ideas Meigs put forward seemed to stick.
The reasons that these ideas persisted, even to the modern day, are the subject of lengthy discussion that I am not qualified to expand upon, but the contribution of systemic racism is undeniable. In this context Meigs’s ideas fit into the pervasive societal notion that Whites and non-Whites were fundamentally different, and so the idea that endometriosis risk was different between racial groups was easily taken up by society and the medical community. Challenging these ideas can be done, but the widespread view of a group, or groups, of people as ‘different’ creates inherent biases in people’s minds. Even when presented with evidence to the contrary, (such as the removal of racial differences in endo from medical textbooks in the 1980’s) doctors and scientists can be swayed by their biases, thus racial discrimination in endo diagnosis persisted.
To highlight how this discrimination leads to deterioration in treatment, the authors cite a 1976 publication by African-American gynaecologist Donald Chatman. Dr Chatman pointed out that he observed evidence of endometriosis in 20% of his private African-American patients, yet 40% of those women had been initially misdiagnosed with pelvic inflammatory disease. I’m not going to pretend that misdiagnosis of endometriosis isn’t common across the board. Multiple studies have shown that endometriosis misdiagnosis rates are incredibly high even today. However, being dismissed or misdiagnosed because of your race is an additional layer of bias and prejudice on top of all the others experienced by people seeking a diagnosis of endo that needs to be addressed with as much importance.
In their other paper, the authors reviewed all the current evidence surrounding the different ways in which endometriosis presents and is diagnosed in different racial groups. They found that, in general, Black women were less likely to be diagnosed with endo than White and Hispanic women, while Asian women were more likely to be diagnosed than White or Hispanic women (using the US definition of ‘Asian’). The diagnosis did seem to vary by symptom, for example in women presenting with infertility, White and Asian women had similar diagnosis rates of endo. The authors also point out that one study suggested that Asian women were more likely to be diagnosed with stage 3 or 4 endometriosis.
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It is one thing to accept these findings on face value, but it quite another to recognise our own biases, put them aside and dig deeper and find the reasons behind the findings.
In medicine we have to consider the difference between ‘everyone is equal’ vs ‘everyone is the same’. It is possible that people of different ethnicities have different presentation of symptoms and very different experiences with those symptoms when it comes to endometriosis, and in that way, everyone is not the same (For example, This paper describes the theme of ‘changueria’ experienced by Latina women with endo). However, everyone does deserve to be treated equally, i.e. offered the same level of care and treatment that takes differences into account. By ignoring the cultural and ethnic differences in endometriosis presentation and using a blanket diagnostic criteria created from observations of one ethnicity (usually White) people cannot be treated equally.
A good example of ‘same vs equal’ is the way in which medications are tested before being put on the market. Before a new drug becomes available it has to go through clinical trials. These involve recruiting volunteers to try the drug and see if it has the desired effect or any side effects. In the US the vast majority of volunteers for drug trials are White and male (for example, see this analysis of heart failure clinical trials) and so the effects and side effects of a new drug are assumed to be the same for everyone based on testing on White males. Does this mean everyone is treated equally? The racial gap in treatment effectiveness suggests not. This letter highlights that, even when insurance status, income, age and severity of disease are comparable, racial and ethnic minorities fair worse and have higher death rates than Whites in the US.
The debate about whether racial or ethnic differences can lead to differences in the way someone responds to a drug is still ongoing. Some studies suggested that certain treatments for a heart condition and stroke worked better or worse depending on the patient’s race. Follow up studies (link and link) did not support these findings though. Increasing the diversity of participants in clinical trials is therefore essential to allow underrepresented voices to be heard in the development of new drug treatments.
This issue also extends into the wider field of scientific investigations. Let’s take this recent paper as an example. This paper is investigating the demographics of women in the US with endometriosis and psychiatric disorders. Of the patients recruited to take part in this study with endometriosis and psychiatric conditions, around 80% were White (this is fairly typical for most studies in western nations).
In the discussion the authors state “Psychiatric comorbidities were most common in white women of reproductive age between 26 and 45 years and from lower socioeconomic status” and in the conclusion “Endometriosis with psychiatric comorbidities is prevalent in young white females from a middle-income family”. Whether or not it is the author’s intention, this does read as if endometriosis with psychological conditions (such as depression, anxiety etc) are more common in white women and less common in Black or Hispanic women, this is however, an incorrect interpretation.
To investigate if any difference existed in endo and psychological conditions between races you would have to recruit equal numbers of each race and look at proportions of different psychiatric conditions while also taking into account socioeconomic status, income, insurance status, family history of endo and psychological conditions etc.
What then can be done to address the problems we currently face with racial bias and endometriosis? First and foremost, it is to accept that the disease does not discriminate by race and therefore neither should we. However, we must also accept that people do face additional levels of discrimination when trying to get diagnosis or treatment because of their race. To investigate this we need more studies examining the diverse journeys of people with endometriosis, how their background and culture affects the way they seek treatment, what challenges they have faced in getting a diagnosis, what profile of symptoms they have and what ways did they manage these symptoms prior and post diagnosis. We can and we must ever stride toward equality.
Obviously, the issue of racial bias in medicine isn’t going to be solved within the confines of this blog post, but we do have some issues to think about - such as, is race a valid factor in medicine given how loose the definition is? And is it fair to assume a treatment will work the same way in all races if it is only tested on one?
To continue learning about this topic, here are some links to personal accounts and other articles on living with endometriosis as a person of colour
https://www.self.com/story/tia-mowry-endometriosis-black-women
https://www.theroot.com/my-body-my-pain-listen-to-me-and-all-black-women-1794332651
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