Transcript
MIC CAVAZZINI: Welcome to Pomegranate Health a podcast about the culture of Medicine. I’m Mic Cavazzini for the Royal Australasian College of Physicians. I’m happy to announce to that the RACP Congress is being held in real life at six locations over the first week of May. There are some brilliant speakers lined up, including Dr Michael Ryan, Executive Director of the World Health Organisation. The program will also be streamed digitally to members across Australia and New Zealand, Aotearoa.
And if you browse for Online Learning Resources @RACP you’ll find a whole library of educational content. The College Learning Series contains peer-reviewed lectures based on the trainee curriculum. There’s a dedicated endocrinology series called Hormone School, and the Medflix repository that contains other seminars of interest like the recent discussion about artificial intelligence in diagnostic medicine. You’ll find eLearning modules on almost every professional domain, and aplatform called QStream that’s guided by weekly case studies to discuss with peers.
Now to today’s podcast. This is the third part in a series about Gendered Medicine and we’re going to ask whether some of the structures in health funding and research might unwittingly disadvantage women. There’s a story from a couple of years ago that captures this tension neatly.
In 2018 a general practice in Melbourne was crucified on social media and by the federal health minister for charging patients more to see a female doctor—the gap fee was $45 compared to 38 for a consult with one of their male doctors. This was seen by many as an example of blatant sexism against the female patients who preferred to see those doctors. In fact, it was a rational response to the way our fee-for-service system rewards consultations.
The female GPs at this practice found that they were only getting through an average of four patients an hour while their male colleagues were seeing six. It’s been known for almost twenty years that female GPs in Australia and around the world tend to conduct longer consultations, and there’s evidence that they deal with more discrete health issues during each one.
They’re also presented with more female-specific health conditions, endocrine problems and also psychosocial issues which all take more time to address. Maybe the patients with complex conditions are attracted to female doctors because of the extra attention they’re given. But whatever the correlation is, conducting fewer consults per day is one of the reasons that female GPs earn around 25% less than their male counterparts. For specialists the pay gap is around 16%.
To help untangle these many threads I approached Dr Zoe Wainer, who has examined the healthcare system from more angles than most people.
ZOE WAINER: So, Dr Zoe Wainer, my current role is as Director of Clinical Governance for BUPA Australia and New Zealand. I also chair the Board of Dental Health Services Victoria, which is the state-wide public oral health service. My clinical background is cardiothoracic surgery and during my clinical time I undertook a PhD, studying sex differences in outcome in people with non-small cell lung cancer
MIC CAVAZZINI: And we’ll get on to some of your research later as well. But I’ll start with a story you’ll be familiar with, the GP practice in Melbourne that was charging patients more to see a female doctor. What was your response to that case? If women’s health does take more time, is there a bias in the way health is delivered? Do you feel like female patients and doctors are being penalised by the current system?
ZOE WAINER: It’s an interesting observation. I mean, I would come back to looking at men and women, not just women’s health and, in fact, are we not spending enough time in the way we’ve designed health care currently, given the rise of chronic disease?
I think there are difficulties with the fee-for-service model and that’s one of them; that, in fact, doctors are not rewarded for the quality of the care that they’re giving and, in fact, are not even sure how to measure that. But part of good health outcomes is actually rewarding the kind of clinical behaviour that we are seeing there, which is obviously taking longer with patients who need that additional time. So, I think, thinking about how we fund what we fund is really important.
There are certain conditions that fee-for-service is absolutely the appropriate approach because, clearly, fee-for-service drives servicing, and I think we could say immunisation is a really good example of that. But there are a range of different ways that we can design funding models. And that’s complex, there’s no doubt about it. But you can design funding model models so that you’re actually addressing both that kind of equity component, which they were trying to address, clearly. But it’s actually the patients that are getting penalised. So how do we address both?
MIC CAVAZZINI: And why is the current system so, I don’t know, unresponsive to those different types of consultations? I mean, there already is a time-tiered pricing scheme built into the Medicare Benefits Schedule. So, sticking with GP attendances, the rebate ranges from $39 to $75, depending on whether it’s a up to 20 minutes or up to 40 minutes or over 40 minutes consultation. So, why does it not play out in practice that patients stay as long as they need to and clinicians get paid as much as they should?
ZOE WAINER: That’s the $64 million question, I think, isn’t it? I think I’d be fixing the whole health care system if I could come up with that answer. Look, I think these are models that were developed decades ago around what was a very different case mix at the time. They were absolutely fit for service and appropriate then in the ‘70s. We have a very different emerging case mix of health and illness now, and so I think we see a constant debate about what is the appropriate funding models that we need in different settings and circumstances, whether that be public, private—both settings are having these kind of conversations around what is value, what is appropriate charging and appropriate remuneration. And is it a blended example where you have a, you know, you recognise the time commitment of the clinician and, at the same time, there’s a component perhaps of capitation or there’s a component of a reward of a good outcome.
MIC CAVAZZINI: I mean, that general practice in Melbourne, would they have provoked less outrage if instead of charging differently for male and female GPs they just made the time tiers more explicit? The impression I get is that practices actually aren’t too pedantic, like lawyers are, charging in 6-minute increments.
ZOE WAINER: Yes.
MIC CAVAZZINI: They basically only ever use two of those categories but they’ll never penalise patients who do take up a whole hour, for example. Is that fair?
ZOE WAINER: Look, I work for a health insurance company but we are legislatively unable to cover primary care so I can’t sort of comment from that perspective. But certainly, anecdotally, that’s my observation. Doctors are really, you know, they get into that profession because they’re vocationally driven. It’s a challenge, isn’t it? I come back again to that idea of actually, you know, funding for good health outcomes. It’s easy to say and difficult to do, but there are some very good examples from around the world about how you can do that.
And some of the definitions and methodology coming out of Harvard Business School and of the University of Texas Dell Medical School, called value-based health care, which is, you know, how do we identify the outcomes that matter to the patients, and then, how do we incentivise all of the system to actually be heading in that direction. Whereas if you actually look at our health care system now, as world-leading as it is – I’m certainly not criticising it from that point of view – but the various stakeholders in the system actually at times have diametrically opposed incentives and they aren’t focused around the outcomes that the patient wants.
MIC CAVAZZINI: Let me just chime in here with some other observations on the theme of patient pathways in the health system, from Adelaide general practitioner Dr Clare Fairweather. Already in Medicare there exist what are known as chronic disease management plans, which release funding for allied support services. And in a 2018 article in the Australian Health Review the authors argued that endometriosis pain does qualitatively meet the criteria for chronic disease because it lasts more than six months, and is likely to benefit from structured multidisciplinary care.
But it’s entirely at a GP’s discretion whether to invoke one of these management plans for a given patient, and Dr Fairweather says there just isn’t this recognition of chronic pelvic pain. She made these comments for Gabrielle Jackson’s book which we discussed in the last episode, and I contacted Dr Fairweather to ask what needed to be done.
Updated practice guidelines would be a good start, and in July 2018 the Australian Department of Health did launch a National Access Plan for Endometriosis. This was backed by $13 million dollars for research into non-invasive tests, for gynaecology guidelines and education, even resources for secondary schools. Unfortunately primary care was totally overlooked, and Dr Fairweather was the only GP invited, at the last minute, to the round table that led up to the plan.
Another general practitioner interviewed by Gabrielle Jackson was Dr Anita Saldanha. She perceives a gender bias even at the level of specific Medicare item numbers. In the Medicare Benefits Schedule, an attendance where a cervical smear is performed is rebated at $38 just like any regular consult, even though it requires a fair bit more skill and care. Insertion of an IUD gets back a little bit more at $47, but compare that to excision and suture of a skin lesion, which is rebated at $83, though for multiple lesions it can return between $188 and $334. Dr Saldanha says that in the time that it takes her to do a cervical smear, her male colleague next door can see two or three patients. Many of them have never performed a pap smear in their entire careers while she often does four in a day.
But how did this apparent bias in the MBS come about According to medical billing expert Loryn Einstein the answer is likely very dull and bureaucratic. When the Medical Benefits Schedule was launched in 1984 there were less than 1900 item numbers and Medicare expenditure totalled a little over $2 billion. We’re now at over 6100 item numbers and almost $34 billion dollars in expenditure.
Who knows how the bean counters dreamed up the benefits for pap smears and skin lesion excisions. But more than any grand design, it’s been a constant process of tinkering with an ever-more complicated machine. The MBS Review Taskforce is a recent and welcome initiative focused on determining the clinical relevance of every item number, to weed out any inconsistencies and the loopholes. But as Loryn Einstein said to me it’s not within the scope of the Taskforce to correct any errors that were made in assigning a dollar value to each item number. If you were to redesign the MBS from scratch, with forty years of use data to draw from, it would certainly look very different. Let’s go back to Zoe Wainer, and the tensions across the whole funding model.
ZOE WAINER: One of the areas that we’re interested in is also looking at potential complications, for example, in cardiac disease where women have worse outcomes and potentially take longer to get to the path lab and et cetera. And what is that costing the Australian health care system, public or private— because I actually come at these kind of questions agnostic to the system, I think it’s kind of irrelevant. Whether it’s public or private, the challenges will be in both systems and we need both to be sustainable.
MIC CAVAZZINI: Gabrielle Jackson also interviewed a gynaecologist, Dr Susan Evans, who said that Medicare gives her more financial incentives to operate rather than to spend long consultations talking through the situational triggers of chronic pain, and particularly endometriosis. So, you end up with some patients getting ten laparoscopic excision surgeries when no more than two should be required. And so, this gets to your point about quality care and cost efficiencies.
ZOE WAINER: So there definitely could be a gendered element to that, but I also come back to if we can get our system aligned around outcomes that matter to the patient sitting in front of us, and we remunerate that effectively, that actually we’ll start to address those issues. Because I’m sure if you gave the patient the option of ten surgeries versus two, we know which one they would pick if they were going to get the outcome that they wanted. So that’s around, I think, rewarding the best outcomes as opposed to rewarding activity.
MIC CAVAZZINI: I wonder, though, if there are biases across the board, not gender-specific but we just have this expectation of big interventions and quick fixes, and surgery looks like it’s going to fix something, whereas talking through and just going off to rehabilitation, and it might take months of physio and counselling. For some people, patients and doctors, that doesn’t feel like you’re doing enough.
ZOE WAINER: And so, I think you’re touching on a bit there, is also the patient expectations. And so patients feel like if things are being done to them, you know, that’s the whole kind of placebo element of it, there’s a more effective placebo component if you have surgery? So, there’s also about setting what are patients’ expectations are about the care, and that’s where it’s absolutely vital that the clinician is an active part of that conversation.
But the challenges that you’re bringing into the conversation is, well, what happens then when the clinician or doctor/surgeon is incentivised not to do that. You know, there are some really perverse incentives in our system whereby hospitals will get paid more if a patient stays longer. And I know it’s a particular frustration for some surgeons who are academic and who are wanting to demonstrate good outcomes and relatively quick discharges for their patients with new techniques and approaches, but the hospital’s incentivised to keep the patients longer. And so that’s when you’ve got to actually think about, well, how do we bring those incentives into the system.
MIC CAVAZZINI: Yeah, a rheumatologist gave me a similar example of those opposed incentives. So, she told me that GPs and colleagues, specialist colleagues, often refer the complex cases to her because they know she has the right touch to get to the bottom of these cases and earn the patient’s trust. And she’s happy to see them. But when she asked the practice principals if she could be compensated for the extra time she took with them, she was told that wasn’t possible. So, it seems like no one wants to pick up the tap for these more, for the more complex consultations.
ZOE WAINER: There’s a fantastic example of value-based health care and a different funding model out of the Netherlands. It’s called Diabeter. He was a paediatric endocrinologist, he set up his practice outside the hospital based on the principles of value-based health care from Harvard Business School. So that’s a continuous quality improvement process. He got very good outcomes for his children with Type 1 diabetes. He published these transparently, benchmarked them next to the national outcomes. They were so much better than the national’s levels of HbA1c that the insurer said, well, we will go into a 10-year profit sharing arrangement with you because we can see how much healthier our customers with you are going to be in a decade. So that’s a win-win-win for everyone because the patients get a better outcome, he gets better remunerated, and the insurer actually saves money but is also able to share those benefits with the clinician at the same time. And, to your point earlier, those consultations take longer, in the first instance, to set up in the process. But the outcome in the medium to longer term is fantastic.
MIC CAVAZZINI: And even those studies you always hear about, about female doctors producing better outcomes, whatever the reason be, maybe because they spend more time, maybe because they follow guidelines better. If you did the maths on, like you say, the outcomes, perhaps that’s that investment of time is cost effective as well.
ZOE WAINER: Exactly. I think that’s a really good point. It is cost effective in the medium, even in the short/medium and longer term. And yes, I recall being at the Victorian Government’s conference, presenting with the team from the George, and I relayed exactly that observation or the research that you were just referring to, and the CEO of Safer Care at the time said, “Therefore, isn’t that, by definition, better quality?” So, I think it comes back to that following clinical guidelines is a really good idea, because they have evidence behind them.
MIC CAVAZZINI: These patterns in the practice of female doctors have been known for some time. Canadian findings show that the patients of female doctors are less likely to be admitted to hospital and this may be a consequence of more thorough preventative medicine. Even within hospital settings their patients have significantly lower adjusted mortality and readmission rates compared to those cared for by male physicians. The differences are small, and look, there are confounds that could explain these data too. But they beg the question as to what else can be learnt from female colleagues? What is it about quote-unquote “femininsed behaviour” that might be so effective. Here’s a synthesis from Professor Debra Roter at the Johns Hopkins School of Public Health who was lead author on a 2002 meta-analysis in JAMA.
“Female physicians engage in communication that more broadly relates to the larger life context of patients' conditions by addressing psychosocial issues… greater use of emotional talk, more positive talk, and more active enlistment of patient input... Like female physicians, their patients talk more overall, make more positive statements, … and express more partnership-building than patients of male physicians.”
I don’t want to overegg this argument and the authors also make the point there is far more in common between the practice of male and female doctors than there is difference. But it’s just another reminder about the gaps in knowledge, the delays in progress, that come about if we only ever listen to traditional authorities.
One perplexing example of this is liver transplantation. It used to be the case that black patients in the US waited longer for a liver transplant than white patients. To address this an objective scoring algorithm for prioritization of recipients was developed called MELD, an acronym of Model for End stage Liver Disease. Since this was introduced almost two decades ago the disparity by ethnicity has been ironed out—but now it’s women who’ve been bumped down the waiting list.
It’s still not clear whether the bias in the MELD score is because it gives too much weight to creatinine values, typically higher in men, or whether sex differences in liver disease produce different MELD score trajectories. But the result is that women are now more likely to die waiting for a graft, or to fall off the list because they become too sick to receive one.
This example, and the one about MBS funding mentioned before, are a bit like the Swedish snow-clearing story we heard in the introduction to episode 66. Even without any ill intentions there are subtle biases in the way these systems have been built that end up disadvantaging women. In this case it’s an algorithm built with unwitting knowledge gaps about liver disease across the population.
Underrepresentation of females in clinical research continues despite best practice policies. The same is true of inclusion ethnic minority groups in Australia, as discussed in a 2017 MJA editorial. The excuse from researchers has classically been about signal to noise- if you restrict the heterogeneity of your participants, then you’ll get more statistical power for a smaller and less costly trial.
Hormone variations to do with menstrual cycles or use of contraceptives and HRT have all been viewed as potential confounds by researchers. But by excluding participants from trials there’s the risk that you’ll miss adverse events that end up occurring in the broader population.
Take the sleeping pill Stilnox. Since the drug was registered in Australia in 1997, reports began trickling in of unusually strong reactions. Over the next decade these would total over 1000, and as Zoe Wainer says, female were particularly vulnerable.
ZOE WAINER: OK, so Stilnox, or Zolpidem as it’s known, is a sedative medication. In, I think it was 2014, in America, they undertook driver safety studies on it because they were noticing a pattern of people having car accidents after having had it previously, and they wanted to work out exactly what the half-life of it was and was it impacting. What they found in that study was that 12 and 24 hours afterwards women had almost twice the amount of Stilnox in their blood than men did. And so, effectively, they should be on half the dose. Which actually makes sense, because, if you think about it, it’s acting at similar receptors to alcohol, and we know there’s a different dose response in women with alcohol, so why wouldn’t there be with these drugs that act at the same receptors.
So, America put in place requirements that the companies actually change the recommendations for the dosage for women. Australia has not done that, and remains silent on it. So that for me is one interesting observation. And in fact, there was the tragic death of Phoebe Handsjuk in Victoria and the coroner’s case into that found that that was potentially a contributing factor. She had Stilnox in her blood and, had those recommendations been in place, that may have assisted in preventing that tragic death.
MIC CAVAZZINI: Even aside from the specific pharmacokinetics of that particular drug, we know that women metabolise drugs differently and that’s been known for a long time. But there isn’t any regulatory requirement to test different doses and so on?
ZOE WAINER: So, in the wake of Stilnox findings in America, the NIH has put in place a requirement for researchers to include equal numbers of male and female cell lines, or male and female animals, and they retrospectively put additional money into existing research projects to allow them to do that. We are not yet quite that strict in Australia. But, the pushback I hear around research about it costs too much to double, because you have to effectively double the numbers to get appropriate population size to be able to disaggregate and compare. It actually costs an enormous amount to get a drug to market and have it fail based on complications based on negative side effects in women. And there is plenty of evidence to demonstrate that that’s exactly what happens. I think there was a study that showed that eight out of ten drugs to market at a certain point in time had to be pulled from market because of the negative side effects in women, and they had not disaggregated in their initial studies. So, I’m firmly of the belief that you need equal numbers of men and women.
MIC CAVAZZINI: How would you design a study now? Would you start in a small pool, perhaps in men, and then do a follow-up in women? Is it more cost effective to go big, go early?
ZOE WAINER: I think you have to do both, early, and I think it’s to the point that we started off our conversation in terms of you actually need to understand the difference. It’s not about just understanding what happens in women and just understanding what happens in men. The other one that comes to mind when you’re raising that is actually hip replacements and joint replacements. And several conversations I’ve had with companies about the fact that of course they adjust for size. But of course, in something like a hip it’s not about size, it’s actually about women’s anatomy and men’s anatomy is very different. We stand differently, we walk differently. And there are quite clearly documented more poor outcomes in women with certain hip replacements as a consequence of that because it actually erodes at the bone and doesn’t sit as well and function as well as it does in men. And it’s interesting, I’m actually surprised the drug companies and device companies haven’t seen this as a marketing opportunity, to be a first mover in market to say we actually cater for both sexes. But they just don’t seem to have grasped that yet.
MIC CAVAZZINI: Your PhD was on sex differences in oncological markers specifically, is that right?
ZOE WAINER: So I wanted a PhD that was actually useful, clinically, for the clinician in the patient journey, and so we actually looked at, each step of the way as a surgeon or an oncologist or respiratory physician gets additional information about a patient, does their sex matter. At what point in time do I need to think, “Ah, I have a man or I have a woman sitting in front of me, does that matter to my clinical decision making at this point in time?”
MIC CAVAZZINI: And do you want to give us a quick wrap of what you found?
ZOE WAINER: Yeah, sure. Yeah, so basically, every step of the way sex makes a difference. Originally, one of the papers we published was actually looking at PET scans, and at that point in time in lung cancer there was a hypothesis that the hotter the scan was, in other words, the more of the radio tracer that the cancer took up, the more malignant the tumour was. And when we did that study we found, overall, that it was mildly prognostic. When we split by sex, it was strongly prognostic in men and not at all prognostic in women. And had we not done that, we would not have, like, had we not split by sex, we would have just said “Oh, it’s mildly prognostic.”
What was really interesting is we struggled to get that published. And that was with one of the leading nuclear medicine people in the world as a co-author and supporter. And that was because people would say to us, “Oh this isn’t a new finding.” Well, it was unique, nobody had ever published that. But people would just see sex differences and go, “Oh, we know men have worse outcomes” and move on, but they wouldn’t get past that.
But it gives us the difference between men and women so we can start and think about, well, what is it about a woman’s tumour, and is there something we can replicate, potentially. So, we start thinking about the difference between men and women, not just these two different populations. And one of the reasons I raise men’s health and wellbeing as well is that I think sex and gender has become synonymous with women’s health, and it’s not. I actually think there is a lot to be learnt from the differences. If men are having better outcomes, let’s understand why. Is it a gender issue or is it a sex issue? And how do we actually then provide that benefit to women? And vice versa. Is it time-to-cath lab, which is gender? Or is it, in cancer’s case, definitely there’s a biological factor?
MIC CAVAZZINI: Yeah, and in 2014 the NIH focused their attention on sex bias not just in clinical studies but in basic and translational research too. In my neurophysiology lab days, we were always superstitious about room temperature, the batch of salts we’d got in, the time of the month and even time of the year. But a meta-analysis has shown recently that this belief that female rodent models produce more variable results is largely unfounded. And I do like the recommendation from some Uni of California researchers that, and I quote, “When only one sex is studied, this should be indicated in article titles and that funding agencies favour proposals that investigate both sexes and analyse data by sex.” So I like that they’re suggesting a new benchmark as to what gets considered as comprehensive research.
ZOE WAINER: Absolutely. I have had pushback at the basic research level around economics from the point of view of if you want equal numbers of female and male cell lines and equal numbers of female and male animals in research, it costs a lot more. Professor Londa Schiebinger from Stanford, who we’ve done a bit of work with, just turns around and says, “But that’s called good science.” And I think there’s no excuse, basically, for not having equal numbers of male and female cell lines and animals.
MIC CAVAZZINI: In feminist critiques of medicine, the understanding of the clitoris is a go-to example of just how biased the scientific lense has been. Incredibly, it was only in 1998 that the architecture of this organ was accurately characterised. Australian urologist Professor Helen O’Connell found that it was much bigger and more three dimensional than had been assumed in textbooks. She also revealed just how innervated and vascularised the clitoris is—important considerations for any urologic surgeon trying to retain function and wellbeing for their patients.
Professor O’Connell had been motivated to look into this ever since her medical studies in the eighties, when she saw the clitoris described in Last’s Anatomy as a “failure” of male genital formation. This doesn’t sound far advanced on Sigmund Freud’s belief that it was a poor “substitute for the penis,” capable of infantile orgasms only. But Freud was not the first medico to get the clitoris so wrong and I hope you’ll forgive this revealing historical detour.
In 1545 French physician Charles Estienne published the earliest anatomical drawing that labeled the clitoris, describing it as “a little tongue” belonging to “the woman’s shameful member.” The shame is that Estienne thought it was connected to the bladder and involved in urination.
He was followed by Realdo Colombo, a student of Vesalius and dissecting buddy of Michelangelo. Colombo’s influential publication of 1559 gave quite an excitable description of the clitoris’s erogneous potential, and went on to say, “if it is permissible to name the things discovered by me, it should be called the sweetness of Venus. I can’t say how astonished I am that so many remarkable anatomists had not detected it...” But his successor at the University of Pisa begged to differ. Gabriele Falloppio, of Fallopian fame, published his own book a couple years after Colombo and accused him of plagiarising this “discovery”.
Both were blissfully unaware that Rufus of Ephesus had already written about it 1400 years prior and coined the word kleitoris to mean “little hill.” But as one etymological dictionary states rather sardonically, the clitoris “had been known earlier to women.” It’s just that the midwives of ancient Egypt and Greece didn’t write the canonical texts, and the women healers who followed them were often scorned as witches. And there’s the rub.
It’s not just that anatomical terms were written almost exclusively by men, but many of them are named after men. Last year obstetrician Dr Kirsten Small ruffled a few feathers with her Tweet suggesting that eponymous anatomical terms be replaced with more neutral and more informative ones. So uterine tube instead of Fallopian tube, or rectovaginal pouch rather than the pouch of Douglas.
This prompted emergency physician Mike Cadogan and colleagues to compile an entire catalogue of these eponyms. Even just looking at macroscopic anatomical terms, there are 424 attributed to male physicians, or “dead white dudes” as Dr Small put it in a subsequent interview with Australian Doctor magazine. The only exception is the Nitabuch layer. You know the one, the fibrinoid membrane of the placenta? Discovered by 19th century Russian pathologist Raissa Nitabuch?
Drs Small and Cadogan argue that eponymous terms are harder to remember, and sometimes vary confusingly from place to place. But for some anatomy students and patients there may also be a ring of patriarchy or of colonialism. Sim’s speculum, for example, is named after its inventor, J. Marion Sims the 19th Century “father of modern gynaecology”. He also developed groundbreaking surgical techniques to repair vesicovaginal fistulae, but his early attempts were practiced patients who were also slaves of the American South.
In her call to arms, Kirsten Small wrote, “We have a personal choice to decolonise our language.” Some other opinion pieces written in response to this argued that of course anatomists of the past were largely men, but we shouldn’t forget these "pioneers of science” nor the moral grey areas in which the culture of medicine was founded. And then the slippery slope argument; Should the unit of radioactivity no longer be named after Marie Curie? Should Verbrugge’s forceps now be called the ‘bendy thingy bone clamp’?
But to my view anatomy is more personal than units of measurement, disease names, and even medical instruments. I suspect it brings no comfort to women or other minorities to be reminded that until recently white men were usually the only ones with the opportunity to plant their flag in the human body for all time.
I don’t know, but let’s get back to the topic of neglected research in women and specifically a paper published last year titled Gender Disparity in the Funding of Diseases by the US National Institutes of Health. The author looked at 74 conditions for which they were able to get good data about disease burden and research investment. Of the 34 diseases found to predominantly affect one sex, there was a skew in funding that disadvantaged women for 25 of these. That’s to say, most of the gendered and underfunded diseases were female dominated.
At the very top were chronic fatigue syndrome and migraine, and endometriosis wasn’t far behind. But in that list you also find digestive diseases, uterine cancers, eating disorders and rheumatoid arthritis. I asked Zoe Wainer if she thought these diseases had been ignored because they didn’t affect men much if at all. But she suspects it’s less to do with overt bias, and more about gender disparities in the workforce.
ZOE WAINER: It’s an interesting question. I think the work of people like Doug Hilton at WEHI in ensuring that women researchers are supported and not hindered in the progression of their career is vital in addressing those issues. I think the NHMRC has done some really good work, and there’s more work to do in that space. Because women see that women are missing. And it’s not that men don’t support women and women’s health and wellbeing, but the privilege of the partial perspective means you just don’t necessarily recognise it. And it’s having female researchers, women in leadership roles, that actually can identify that there is a gap.
MIC CAVAZZINI: Yeah, I tend to agree with you. We already talked in Episode 16 about the systematic drivers that keep women doctors out of academic positions. So, I’d like to think the skew in research is simply that there are fewer grant applications being written by doctors aware of these problems, rather than that the grant applications themselves are going before panels of male chauvinists who’re, you know, at the NHMRC or any funding body.
ZOE WAINER: Yeah, absolutely.
MIC CAVAZZINI: There are other factors that should wake us up. If you just look at migraine and chronic fatigue and fibromyalgia, they carry a burden of billions of dollars on top of the suffering. But also, approximately about 80% of all patients diagnosed with autoimmune diseases are women. The biggest skew is for Sjogren's syndrome with a 9:1 sex ratio, and systemic Lupus has a 7:1 ratio. But rheumatoid arthritis and multiple sclerosis and 100 different immune conditions are all more prevalent in women.
ZOE WAINER: And that’s why the barrier to translation is of great interest to me, you know, and that’s why that response to that paper, well, we know there’s sex differences. We’ve been publishing this for decades, and yet we fail to translate that into different clinical practice. There are other challenges too. I remember speaking to a very well renowned clinician/scientist who did a lot of xenograft transplantation in cancer, and asking whether or not they sex matched. So, were they taking it, you know, were they taking the tumour out of a woman and putting it into a female animal. And they said they didn’t. This is despite studying growth factors.
So I was a baby PhD student at the time and, you know, he was highly eminent and influential, and I just got smacked down. But in retrospect, in discussing it with colleagues at a later date, of course, had he acknowledged that, it would have put in jeopardy a huge body of work for him. So, there are other reasons for resistance that I think we, whilst it needs to be challenged, we also need to be compassionate about. Because, just because it hadn’t been brought to the attention at the time doesn’t, you know, we need to recognise those kind of sensitivities otherwise they’ll become barriers.
MIC CAVAZZINI: And in that list of under-funded diseases, I talked about the NIH paper, there were several non-gendered diseases that were under-funded as well, so conditions like lung cancer and COPD, liver disease and methamphetamine abuse and suicidality. The author, Arthur Merin suggests that these garner less sympathy because the patient is seen to be responsible for their own condition.
ZOE WAINER: Yeah, exactly.
MIC CAVAZZINI: And he says that many of the female dominant conditions have also been tarred with this brush. So, chronic fatigue syndrome and endometriosis he says were in the past, and I quote, “Stereotyped as being brought on by women’s life choices.” Do you still see, you know, do you see these unconscious tropes being played out in academic and clinical interests?
ZOE WAINER: So I certainly did in lung cancer, and it was a deep frustration because, in fact, a lot of the drivers are not dissimilar to that of cardiac disease and yet our community doesn’t have the same response. So, whilst the anti-smoking campaign has been incredibly powerful and effective and you wouldn’t want to step away from it for a moment, that stigma is really powerful, and impactful, I think, both at the research level but also at the individual patient’s level, and not positive.
But again I come back to the fact I think there is a lot to be learnt from the differences so, I personally am watching long COVID with great interest because I strongly suspect, from what I’m seeing, it’s an autoimmune reaction and, therefore, where are the numbers, and what's the sex differences looking like there. Because we know men have more severe outcomes in the acute infection; what's the impact in the long term?
MIC CAVAZZINI: And it appears that long COVID is predominant in women. Is that going to give more credence now to the once-controversial diagnoses like chronic fatigue syndrome and myalgic encephalitis? Are people finally going to start taking them seriously now that the precipitating event is so obvious?
And obviously, the COVID pandemic has uncovered all sorts of other gendered issues both in medicine and socially. Of course we know that women have been more greatly affected by job losses and more burdened by domestic responsibilities and home schooling during COVID. There was an interesting audit of publications submitted by Italian astronomers and, while manuscripts from women decreased in frequency in the first half of 2020, those by men actually increased, suggesting that not everyone got more done while working from home.
ZOE WAINER: Yes, absolutely. I think that’s kind of self-explanatory.
MIC CAVAZZINI: The economic pressures of COVID-19 haven’t only affected the productivity of women in academia. In fact, the sectors hardest hit by the pandemic such as hospitality, are those that predominantly employ women. And even before the pandemic, Australia was sliding downwards on the World Economic Forum’s Gender Gap Index which takes into account, relative gender outcomes in health, educational attainment, economic participation and political empowerment
Back in 2006, Australia had been ranked 15th but in last year’s scorecard it was down in 44th place. Australia doesn’t just lag behind the progressive northern European countries, and traditional peers like New Zealand, which is ranked 27th. It also comes in below than Nicaragua, Namibia, the Philippines, Albania and Belarus. Seriously.
In an article for the UWA Business School, Professor Alison Preston had this to say about the figures. “Our performance is hindered by our poor representation of women in politics and our labour market structures, including high levels of sex-segregation by industry and occupation. It is hard to imagine Australia ever ranking in the top 20 again – especially given the Federal Government’s response to the COVID-19 crisis and their seeming lack of interest in the issues affecting women.”
I’ve drifted a bit from gendered medicine itself, but economic empowerment is never too far from health and wellbeing. Let’s hope that the reckoning that has gripped Canberra in recent months, around respect, opportunity and safety for women, represents a turning of the tide at last.
For now, I want to thank Dr Zoe Wainer for her insightful contribution to this episode of Pomegranate Health. I’m also grateful to Dr Claire Fairweather and to Loryn Einstein for patiently answering my queries. To follow up on any citations mentioned today or to log CPD credits, go to our website racp.edu.au/podcast.
Finally, I must thank those members and friends of the College who provided feedback at various stages of this three part series. They are Ilana Ginges, Sern Wei Yeoh, Lucy Haggstrom, Nele Legge, Keith Ooi, Adrienne Torda, Li-Zsa Tan, Vicka Poudyal, Rhiannon Mellor, Rosalynn Pszczola, Lucy Mitchell, Michele Daly, Krista Peters and Annie Fredrickson. The podcast was written and produced by me, Mic Cavazzini, and does not represent particular views of the Royal Australasian College of Physicians. If you’ve got any thoughts, please send them to podcast@racp.edu.au. Bye for now.