Wednesday, 20 June 2018

Guest post: MSexism

Is the MS world biased against women?

Another week - another news headline about how women are paid less than their male counterparts. This time it is consultants working in the NHS - and Jeremy Hunt, the UK Health Secretary, has vowed to tackle the pay gap.

So what does this have to do with multiple sclerosis?

A lot, I believe.



By paying women consultants less than men, society is telling them they are worth less and valued less. Furthermore, I also think there is a bias in the treatment of women patients - including those who have multiple sclerosis.

As most people reading this blog are aware, women are two to three times more likely to get MS than men and this ratio is rising. Statistically this means out of the 700,000 people with MS in Europe, more than 450,000 are women. For neurologists, this means about 70% of the patients who walk into examination rooms are women. And for the pharmaceutical industry that develops and sells MS drugs - a global market worth US$22 billion and rising - the target patients are largely female.

Yet as a woman with MS, I would argue that the gender specific burden of the disease does not receive nearly enough attention nor research from doctors and drug companies. In fact it is barely referenced at all - and if it does, it focuses on the usual trinity of pregnancy, the menstrual cycle and the menopause. In my opinion, women with MS are often treated as men except “with boobs and tubes.”

Take ECTRIMS - the world’s largest annual conference dedicated to MS. Each year more than ten thousand scientists, researchers, clinicians and drug industry executives from over one hundred countries descend on a European capital to exchange ideas and research in hopes of improving the lives of people with MS.

As a first time attendee last year in Paris, I assumed there would be a strong focus on women. After all, science tells us females are biologically different from males and I assumed ECTRIMS, with its focus on MS, would reflect this. Wrong. My first tip-off was the lengthy scientific programme - 28 sessions - with just one “MS and Reproduction” - dedicated specifically to women with the disease. The four experts speaking were women.

It is the same story for the upcoming ECTRIMS conference in Berlin in October. Out of 27 sessions only one will pertain to women: “Pregnancy management in MS.” This time there will be three neurologists on the panel. Again all women.

Is this important?

Yes. Because I believe women are a unique patient group when it comes to MS - and should be recognised as such. The disease occurs earlier in women; it takes us longer to be diagnosed and our disease progression and disability is different vs men. Physically we are different - beyond the 
obvious. For example, male brains tend to have a slightly higher proportion of white matter - while women have a higher portion off grey matter in the cerebral cortex. So why are we treated the same as men?

This is not the only gender imbalance I saw. In Paris, I was struck by the overwhelming number of male speakers on the panels. Turns out there were a total of 153 panel members and just 45 - or 30% - were women. This seems strange in a conference 47% of participants were women according to Congrex, the conference organiser.

This year in Berlin will be no different. There will be 151 speakers of which 44 or 29% will be women. This means if you are attending the conference you will have a less than one in three chance of hearing a woman speak.

I am not the only one to notice this. Maria Pia Sormani, Professor of Biostatistics at the University of Genoa, has spoken at ECTRIMS every year since 2008. “It is curious that more women are involved in MS research, but when it comes to ECTRIMS just one third of women are speaking,” she says. She believes more women should be joining her to speak.

Such a vast gender gap on panels, I believe, is problematic because it means the views of one group of people - who share similar characteristics - are over represented. Policy is being debated without adequate input from all groups - which leads to discussions that are out of touch and homogeneous. Women experts bring distinct experiences and views to the table - especially when it comes to a disease like MS.

After bringing this up with ECTRIMS Executive Committee, I received this response: “ECTRIMS strongly supports gender and geographical balance in all its scientific initiatives and is convinced that diversity in terms of gender and geographical balance is always beneficial and represents an added value… Currently, in the ECTRIMS Executive Committee, four out of seven members are women.”

I am pleased that ECTRIMS supports “gender and geographical balance” in its scientific initiatives, but when it comes to their own conference could they not insist on true gender balance?

Ironically the only place I saw a distinct bias towards women was on the exhibitor’s stands throughout the conference. Almost every single stand was “manned” (pun intended) by young, attractive, immaculately made up women - handing out brochures and attracting foot traffic. In the trade, these women are known as hostesses or “booth babes.”

To be fair, ECTRIMS does not actually hire these hostesses. Congrex guides organisations looking to set up a stand to Neventum - who, in turn, directs them to a link where they can hire the hostesses. To put it bluntly, this website looks an advertisement for an escort agency: three gorgeous women, bare shoulders, big hair, lips slightly parted… see for yourself.


So let me see if I've got this straight. On the one hand, ECTRIMS encourages women to be at the conference as long as they are attractive and don’t say much. On the other hand, if they are asked to speak - because they are subject experts - they find themselves outnumbered by their male peers. And all this at an international conference which focuses on a serious life-altering disease which affects women at least twice as often as men.

It is not just ECTRIMS that has an uneven relationship with women. Look at Biogen, the global leader in the MS drug market. In 2015, the biotech giant teamed up with the American women’s magazine, Self, to launch the website “Reimagine Myself “which encourages women with relapsing MS to make small, but impactful changes through first-of-its kind program on SELF.com.”

The changes include hints on throwing dinner parties, organising closets and even fashion tips. Self-improvement expert, Jeanne Male - who has an aunt with relapsing MS - suggests: “Avoid wearing anything that’s too fussy to wear, like shirts with tiny buttons… Also, choose bright colors and patterns to lift spirits. I always grab things that reflect the mood that I want to have, so I suggest MS survivors do the same.”

Seriously Biogen? Let’s gender flip this. Can anyone point to a drug company that offers lifestyle advice to its male patients in a similar way? Could you imagine prostate cancer suffers being exhorted to tidy up their tool box or to wear a jazzy tie?

Didn’t think so.

What I would prefer to know from Biogen - which made US$9 billion from MS drugs sales last year - is if they design and manufacture their drugs with gender differences in mind. For example, female patients have a 1.5 to 1.7 times higher chance of having an adverse reaction to drugs compared to men. Women also metabolise drugs differently and may require distinct doses - yet dosages are rarely broken down by sex. I am on Tecfidera, made by Biogen, twice a day. But who is that prescription designed for - a man weighing considerably more than me?

I also have questions re clinical drug trials. Traditionally the majority of development research is done on men - because they don’t have menstrual cycles and they do not get pregnant - making their data easier to analyse. Does this hold true for MS drugs? This might be regarded as heresy by the scientists reading this - but is it time for sex-specific diagnostic testing and treatment for a disease like MS?

There have been many exciting breakthroughs in the treatment of MS recently - and I am grateful for them. That said, I think the time is long overdue to focus on women - as a patient cohort and as MS experts - and discuss why we are being overlooked, sidelined and even patronised.

Advances will not be made until conference organisers, drug companies and other stakeholders take note and make changes. Given that the vast majority of those occupying the top jobs at these places are men - I turn to you. Are you willing to help tackle this bias? For example, are you willing to sit on an ECTRIMS panel - where you easily out number fellow women experts? Or are you willing to insist that women speakers should make up at least 50% of the panel?

This has to be a joint male-female effort. Women can not do this alone. Are you ready to stand up?

By Rachel Horne

Rachel is a journalist interested in health and women's issues. She has an Hons BA from McGill University and a Masters from Columbia University School of Journalism. Previously she covered international news in China and financial news for CNN in London. She has MS.

21 comments:

  1. A brilliant piece. Sock it to them. I hope everyone in the field of MS reads this post. It needs to go viral.

    ReplyDelete
    Replies
    1. Rachel, this is a wonderful piece. I got very teary when I read it. Over the last few years I have started to notice how much gender prejudice creeps into things, even if we think it doesn't exist. Paula Johnson (Ted Women2013) gave a compelling talk about the difference between men and women in the very basics of cell structure - therefore medicine. So why do we think it hasn't been acknowledged or implemented? Answers on a postcard! I, too, have MS and another autoimmune condition that has led to a lifetime of experience on the 'receiving end'.

      Delete
  2. This makes for very interesting reading... I'd just like to add a few points from the non-clinical researcher point of view...

    The main reason there is a lack of female experts on the panels (chairing etc) is because there are simply fewer female experts. It is common knowledge in academia that at a PhD level, if anything, there are more females in life sciences than men. However, the scales are very rapidly tipped the other way as you head up the rankings (for a variety of reasons).

    As for the lack of female speakers, the majority of speakers are generally postdoctoral researchers and fellows who are most likely in their 30's and 40's. My experience of female colleagues at this level is that IF they have been brave enough to start a family whilst in academia (which comes with a whole host of issues), they will understandably cut down on conference attendance in order to look after their children. Therefore, the number of female speakers does not necessarily reflect the number of female researchers but it may not be the conference organisers who are at fault.

    ReplyDelete
    Replies
    1. Yes, but why shouldn't female researcher's partners take time off to look after the kids so that they their female partners can attend conferences etc.? Surely this is something society needs to address?

      Delete
    2. Mouse doctor 3 you shouldn't make excuses for our sexist partners they are part of the problem. Your attitude of accepting the status quo is why we find ourselves in the situation we are in. Your are letting our sisters down.

      Delete
    3. Anon: I’m lucky - I have a supportive partner who does 50% of the childcare. But I don’t want to travel lots as I want to actually see my kids. They are only little once, and they need me to be there. So i would argue it’s about trying to find ways to support this.

      There is good evidence that (for example) female speakers tend to be referred to by their first name, male speakers by their title. This is totally unconscious - not deliberate. Women do drop off the radar as they become less visible, and then less able to pull in grants etc and it becomes a self-perpetuating cycle. So some proactivity is needed to overcome this IMO.

      Delete
    4. I am not accepting the status quo or making excuses for sexist partners, I'm simply expanding on the issue. I agree that partners should be equally involved in childcare but as DrRuth says, it might also be that these women want to stay at home with their children, not necessarily that they can't get the childcare.

      Delete
    5. If childcare was equally distributed (in a non sexist world) you would see equally men and women scientists at confrences. And if childcare was the only issue, at least older women scientists would be represented more at confrences, which again is not the case. Because sexism has deep roots and women need to give twice the effort a man gives for the same goals, the obstacles are never ending.
      You want to say that it's not how the world works, it's them. Being a white man helps to have such an opinion.

      Delete
    6. As a woman with a PhD, I think the academic career of many short-fixed term contracts and few opportunities for permanent posts is very off-putting to people who may end up pregnant. I was lucky and conceived right at the start of a contract rather than at the end of one

      Delete
    7. Dr CT - yes, also with a succession of short term contracts and potentially also moving employer repeatedly, you potentially lose out on accrued benefits - sick pay and also maternity pay. And on top of that may not have a job to come back to post-mat leave if your contract has expired while on mat leave. A big reason to move into a more “secure” field before starting a family...

      Delete
  3. Rachel this is a great post and a topic close to my heart as a female MS researcher. The gender imbalance and lack of female voices at conferences is very noticeable.
    My thoughts - combining a research career with a family is tough. Really tough. Having to turn down speaking and networking opportunities because they are all in the evening just perpetuates the gender imbalance, but I’m not prepared not to see my kids at the end of the day (I leave as they get up in the morning, so don’t really see them then).
    There was a brilliant kings fund podcast last week about women and leadership which made some really salient points - one being that where there is a vote, women get elected, but with internal nominations they don’t. And I think this is very true in the MS Field, as with much of medicine.
    How do we fix it? Mixed panels are a good start, but in the medical ones I’ve seen the male voice still dominates. More use of webcasts/virtual conferencing so people don’t have to travel. Proper childcare facilities at conferences (not just a bare room with a tv in, as is usual) would be amazing and open up attendance...
    Will get off my soapbox now!

    ReplyDelete
    Replies
    1. We are about to launch an online MS conference which will address many of these issues including many women on the steering committee.

      Delete
    2. Thanks so much for your comments. A thought: would it be worth coming up with an online "women MS experts list "on this blog - so that those organising conferences etc can realise there is a wealth of women experts out there? Might help in getting more diverse discussions instead of relying on the same old reliable male key opinon leaders. At the same time, it might go towards providing a more collective women's voice in the MS field.

      Delete
    3. Love this idea Rachel. Women MS experts - please step forward for our list!

      Delete
    4. Gavin, I love the online conference idea. Will it be open for people with MS to freely attend? I'

      Delete
  4. It's funny that poster notices an imbalance of male/female ratio of MS researchers at late stage of career but overwhelmingly turns the eye when females dominate all other stages of career. Is it an issue that at most life science conferences, including MS, 70-80% of PhD students are female and a overwhelming majority of postdoctoral fellows are also female?

    ReplyDelete
    Replies
    1. Yes you make a good point here. I was previously on an Athena Swan committee (for equality in medicine) and they were very keen on 'positive sexism'. I however, am not! I think some of female-dominant groups may have arisen from 'positive sexism' but I'm not sure where the data stands on this.

      Delete
  5. Great article, although parts of it probably raised my blood pressure to unhealthy levels;-)

    ReplyDelete
  6. I have a lot of difficulty dealing with my self-image. of being a " nonsexist male" (pwMS EDSS 8.5 9-HPT 140,420)

    I have a daughter who precisely fits the young woman, starting a family (due next month) in her first Postdoctoral position, ECTRIMS-attending profile that is described in this post and in the comments that follow.

    Sexism is very very very deep. Even this dictation software that I'm using (DragonDictate) is sexist. I tried four times to write the word "her", and program consistently substituted "the"!

    My dear, sexist male friend who died at the beginning of March said, on his deathbed, that "man eating tigers are partial to the odd woman once in a while"

    I'm very interested in the online conference

    ReplyDelete
  7. Nature’s under-representation of women
    Women continue to form too small a proportion of this journal’s authors and referees.
    https://www.nature.com/articles/d41586-018-05465-7?utm_source=fbk_nnc&utm_medium=social&utm_campaign=naturenews&sf192191560=1

    ReplyDelete

Please note that all comments are moderated and any personal or marketing-related submissions will not be shown.