'Women have been woefully neglected': does medical science have a gender problem? Dec. 18, 2019, Nicola Slawson, The Guardian

'Women have been woefully neglected': does medical science have a gender problem?

 

The article focuses largely on funding issues, which us people with ME understand very well.

Undoubtedly women’s health research is the poor relation as demonstrated by this article with research failing to adequately address issues that effect women more than men, but there is also the issue that woman’s self reporting of symptoms is taken less seriously by doctors than men’s. We see this in situations such as a group of preventable miscarriages, where women often express concern in late pregnancy to be dismissed as over anxious, resulting in the preventable loss of their baby. But also I suspect in such as ME men’s reporting of their symptoms is taken more seriously than women’s. I suspect, but don’t know if the research data is there that men are likely to be diagnosed quicker than women.

Further there is indication that the medical world view is biased towards the male perspective. For example with heart attacks, the text book description of a typical heart attack is of a man’s heart attack. Women with heart attacks can present differently, but their symptoms are regarded as atypical presentations, so women are experience longer waits for a diagnosis and appropriate treatment, suffer more frequent misdiagnosis and as a consequence experience poorer outcomes and higher levels of preventable deaths.

But also on top of this there are the indirect issues, in that men tend to be able to access more resources and finance in our society. There is the example of the Swedish local authority that partly as a joke looked at their management of snow clearing from a feminist perspective. The authority put the bulk of its snow and ice clearing into clear roads and largely ignored pavements. However they discovered that the largest related number of hospital admissions were female pedestrians. Their current snow policy benefited motorists, but woman less likely to have access to cars, more likely to walk or rely on public transport and to engage in activities such as taking the children to school or shopping that require more walking.

This local authority increased expenditure on snow clearing for pedestrians, and demonstrate a reduction in A & E attendance and hospital admissions, with an overall cost saving.

 

This story has been doing the rounds for a good while. I don't believe it. I spent my life looking after a disease more common in women. It never occurred to me that it might be less important than one more common in men. The arguments look to me like cherry picking.

There are thousands of academic physicians who have a special interest in rheumatoid arthritis and lupus (women more common) and no more than a handful with a special interest in ankylosing spondylitis (men more common). Breast cancer gets far more attention than prostate cancer - and so on.

 

It is good to know there are areas where we are getting it right, but that does not mean we should not be asking about the areas where we are getting it wrong.

 

Apparently osteoarthritis, a painful debilitating condition is more common in women. Unfortunately, there is no effective drug treatment for OA. This condition effects huge numbers, and yet the only first line treatments available are OTC painkillers, heat, ice, orthotics, weight loss, exercise, physio etc. If these don't provide satisfactory help, then it's surgery.

Surely, drug treatments have been studied for OA?

It seems OA has been taken for granted as an inevitable and unavoidable part of aging. As well, there may be a gender bias at work here. Whoever comes up with an effective treatment for this disease would help many with quality of life.

Other than the recent Duke University announcement involving microRNA, I don't know what else is out there. And, any effective treatment like this is likely 20 years away.

https://corporate.dukehealth.org/news-listing/humans-have-salamander-ability-regrow-cartilage-joints

 

It is a bit more subtle than that.

OA is a stupid term that covers several different problems but the core issue is break up of joint surface cartilage. Joint cartilage has to be made during growth, rather as a potter throws a vase - it has to be done right once and there is no going back. So there will never be a way to deal with OA other than replacement surgery. Anything else is just unrealistic.

I don't think OA is particularly more common in women. It is just that women live longer and get more worn out joints.

Recent claims about re-growing cartilage are of no practical value. Pole have been trying to regrow cartilage since the 1980s and it always falls apart - a bit like trying to mend a book with sellotape. It works for a bit then falls apart again.

 

But what is the evidence that things are being got wrong in a sexist way? For sure people's symptoms are ignored but that happens to men as well as women. My prostate cancer was put down to me being a hypochondriac. My dysrhythmia was put down to me being a hypochondriac. My nocturnal abdominal pain was put down to me being a hypochondriac. I know the feeling, but I don't think women have any monopoly on this.

 

One common ailment that is treated poorly in women is hypothyroidism. Obviously men can and do develop hypothyroidism too, but the proportions are roughly 8 female sufferers to 1 male sufferer.

Some of the men writing into thyroid forums who have the disease (or who think they have the disease) often seem to be fairly shell-shocked at how poor their treatment is. Some have felt that they were held in contempt by some doctors because they had the misfortune to develop what is usually characterised as a female disease. From the point of view of women though, men with hypothyroidism are often treated with a TSH substantially lower than that of a woman in the same situation - they aren't always forced to wait for their TSH to reach 10.

 

I guess I shouldn't be surprised that a physician has experienced the same dismissal as lay people do re serious health issues. But I am. Although I have heard about doctors having just as many problems in the health care system, it still gives me pause.

(Sometimes I really wonder about that word "care" in health care.)

The initial dismissal of patient's complaints seems very commonplace. Recently, the news in Canada has reported about a senior male with undiagnosed stage 4 stomach cancer, dismissed from two separate hospitals with the advice he was just constipated. Very unfortunately, by the time he was treated for the cancer it was too late.

Another instance of a male with stomach cancer told it was indigestion, meant a long delay to get treatment, and it was also too late. And, on it goes.

The moral of the story seems for people to persist. But luck and happenstance seem to play an important role as well.

 

Agree. Properly diagnosing Heart issues for women is a problem, and sending them home with a 'panic attack' diagnosis is/was common.

"Previous BHF research has shown that women are 50 per cent more likely than men to receive the wrong initial diagnosis and are less likely to get a pre-hospital ECG, which is essential for swift diagnosis and treatment".

 

I went backwards and forwards to A&E over the course of about 18 months a few years ago with repeated bouts of very severe chest pain and I was repeatedly told I was fine, although each time I was tested for heart attack before dismissal so I can't complain. It turned out to be caused by catastrophically low iron but the doctors never found this. I had to pay for and learn to interpret my own blood test results. In the end I fixed the problem myself, although I didn't know it was going to fix my repeated bouts of chest pain until after it happened.

If I get severe chest pain now I assume my iron has dropped and, so far at least, I've always been right. If the pain is really, really bad then I still go to A&E just in case. But I do worry that I might miss a heart attack - how am I supposed to tell it is low iron and not a heart attack? I take a maintenance dose of iron now, which helps keep me out of the clutches of the medical profession.

 

Title: women have been woefully neglected.
Me: nodding yes, before even reading the article which I psychically guessed the content of before even reading lol

 

I'm astonished by this. Thank you for sharing.

I'm disgusted that you were treated in this way, & yet I find it strangely reassuring - that if they can mistake even you for a hypochondriac, then perhaps it wasn't personal all the times they did it to me, & was perhaps less about my failure to present it in a way that wouldn't get me assumed to be one, & more about the failure of (whatever) in the Dr in front of me.

 

Until the 1990s, medical science did have a major gender problem, things have been slowly improving since then. Pain studies for example started focusing on the differences between men and women mostly in the 90s. Endometriosis was woefully underfunded for decades but has recently been boosted in Australia and the USA proportionate to the (previously underappreciated) societal disease burden. The aforementioned osteoarthritis receives hundreds of millions of dollars a year in NIH funding, compared to what, $12 million in total for CFS in 2019 (including internal studies). The bias in medical practise is more concerning, with endometriosis and ectopic pregnancy etc. frequently dismissed in importance by physicians (I've personally heard many stories).

Endometriosis strangely enough, can affect men in very rare cases, due to mistakes in cell differentiation. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4183904/

Some medical conditions of men were also substantially underfunded based on disease burden, prostate hyperplasia and prostatitis for example was underfunded by a factor of 4 compared to the mean in Australia. The big difference here is that it is dismissed as it is primarily suffered by older men, rather than young-middle aged women in the case of endometriosis.

 

I think it's important to separate the discussion of a systemic issue, like sexism or racism, from the discussion of what happens to us as individuals. Yes, both men and women (and non-binary or gender fluid patients) are sometimes treated badly by doctors. But that doesn't mean there are no broader, systemic issues in medicine.

I agree that a person making a claim of sexism in the system should have data. But anyone denying that sexism exists should have data, too, not just personal anecdotes.

A recent book on this subject that might be interesting to some is Doing Harm by Maya Dusenbery

 

I'm so sorry, that's awful.

 

I was thinking about this and my conclusion was that any project that could possibly produce convincing data either way is almost certainly not worthwhile.

I think you'd have to do something like: collect basic incidence/prevalance data for every 'common' (or some other sensible threshold) condition, broken down by sex. Get data on sex breakdown of subjects. Get data on sex breakdown of researchers. Get funding data for each condition. Get some quantification of the severity and mortality of each condition. Now you have quantitative data but it doesn't speak to whether or not a condition is neglected because you have no actual picture of the state of the science. You need to do a convincing analysis for each condition of whether or not promising leads are being followed up or stymied. This would take a lot of work and a lot of actual knowledge on a lot of diseases. It would probably have to be undertaken by a federal bureaucracy. The most useful insights gathered would almost certainly have nothing to do with sex.

I think it's much better that people simply point out specific problems that need to be addressed in specific fields if something basic is missing, such as studies on female subjects.

The much more pressing systemic problem that the ME saga has brought to our attention is that a lot of science is just plain trash. Somehow fixing this probably does most of the work of fixing any other systemic problem that may or may not exist.

 

The problem is that, as individuals, we only have experience of how we ourselves are treated in healthcare situations, so how can we provide data on anyone but ourselves? I realise that parents visit the doctor with their children, and that couples may visit the doctor together, particularly as they get old. But still, I would guess that a large proportion of appointments with a GP are done alone in working-age adults, for example. So, any claims of being treated in a sexist or racist way are basically the patient's word against the doctor's.

So how would data on the subject of sexism and/or racism be collected and collated? Observational questionnaires? And who determines whether the patient is telling the truth? I can't see that the data could ever be verified, and nor can I see how sexism/racism can be defined in a way that the average patient would see and understand in a usable way. I've been accused of lying and/or exaggerating on a lot of occasions, and unfortunately I can't produce evidence that I'm telling the truth since nobody, including me, has x-ray vision which allows doctors to see the problems I have, and nobody can see somebody else's pain.

I bought Dusenberry's book and found it infuriating but interesting and well written.

 

@Snow Leopard

Amazing the NIH funds osteoarthritis research at hundreds of million per year - I definitely do not doubt your statement. What I find surprising is that after hundreds of millions of dollars, all that is offered except for surgery, are things that provide minimal help: OTC painkillers, canes, braces, etc. How is all the money being used? It doesn't look like there's any sense of urgency. Millions have osteoarthritis. And millions of dollars have been poured into this field. If ME funding really increased, would we witness the same thing; decades of well funded research seemingly going nowhere?

I am not an expert at all in this field, but it does seem to me that for hundreds of millions per year, research should come up with more answers, and better treatments. Or maybe that's too optimistic and there will never be better treatments, only very small refinements. If that's the case, why keep pouring money into this endeavour?

I'm sure it's the same in some other health research fields. Hundreds of millions funded and little notable progress.

 

I don't buy that. The claim is that there is sexism. I am simply saying that I don't think there is any good evidence for that. I am not saying that I know there is no sexism. My examples were intended to indicate that you can do anecdotes both ways.

The problem with the sexism argument seems to me to be that it goes round in circles. ME was moved to women's health in the US it seems as a sop to the charge of ignoring women's health. But as soon as it was moved people complained it was being relegated to women's health and not taken seriously. I think sticking to the realities of the illness, like for RA makes much more sense.

In the UK the majority of younger doctors are women and the overall balance is close to 50:50. If there is male bias at ground level then women are just as responsible for that as men. One of the ironies of recent times is that the first female president of the Royal College of Physicians, Carol Black, said that she thought women were not suited to medicine. A man had not said that for fifty years.