MSVirtual2020 #SoWhite

M

Last week, I sat down and watched this year’s virtual joint ECTRIMS/ACTRIMS Congress – the world’s largest annual conference dedicated to multiple sclerosis.

Over three days, nearly two hundred leading MS clinicians, scientists and health care professionals appeared on the screen presenting the latest research and treatment on the disease.

Most of them, I noticed, were White.

multicoloured-brain.jpg

Not surprisingly, it made me wonder: Is the the MS scientific community unconsciousl biased against racial and ethnic minorities?

It is a question, I believe, that is essential to ask. In the last six months, we have seen the emergence of the Black Lives Matter movement along with overwhelming evidence that those from Black, Asian and minority ethnic (BAME) communities in the US, Europe and the UK have been disproportionately hit during the COVID-19 pandemic (https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(20)30148-6/fulltext).

So I decided to analyse the ethnic and racial background of the conference’s speakers.

It wasn’t my first time. Two years ago, I wrote an article questioning if ECTRIMS (European Committee for Treatment and Research in MS) had a gender diversity problem. This came after attending the 2018 Berlin conference and discovering less than a third of the speakers were female – in a disease which affects three times as many women vs men. 

Ethnic breakdown

This time, gathering data was trickier. Both ACTRIMS (Americas Committee for Treatment and Research in Multiple Sclerosis) and ECTRIMS do not keep information on the ethnic and/or racial groupings of attendees  – only geographic and sex breakdown.

So with assistance,* I looked up the photos and bios of each of the nearly 200 people who spoke at the forum – as an initial method to establish their racial/ethnic backgrounds. Caveat: I can not guarantee the absolute accuracy of the data. In a few cases, I may have inadvertently counted someone belonging to one group when they self-identify differently. For this, I apologise. 

That said, I think the figures are revealing.

The good news: gender balance at the conference has improved dramatically in the past two years. In 2018, just 29% of the ECTRIMS speakers were women. This year the figure jumped to 48%.

As for ethnic diversity: out of the 188 conference speakers, a large majority – 82% – were White, while 34 or 18% were non-White. Of the non-White group: 14 were from an Asian background, 15 from the Middle East region; while three were African-American and one was Hispanic/Latino.

Let’s put those last two figures into context. According to US census data( https://www.census.gov/quickfacts/fact/table/US/IPE120217), African-Americans and Hispanics make-up nearly 30% of the population of the country.

Male and so pale

Now let’s look at the ACTRIMS board and the ECTRIMS executive committee: the place where the real power and decision-making reside. Two things stand out. Both bodies are majority male – and very pale. 

On the ACTRIMS board (https://www.actrims.org/board-of-directors), there are nine male directors (65%) and five female directors. All are White – except one woman from an ethnic minority background. And this in an organisation with the word “Americas” in the title.

As for the six people on the ECTRIMS executive committee (https://www.ectrims.eu/executive-committee/) four are men (66%), two are women. All are White. 

Why it matters 

ACTRIMS and ECTRIMS are the world’s largest and most prestigious MS forums and, make no mistake, who is chosen to speak in front of thousands of their colleagues counts.

By failing to promote ethnic and racial diversity, it means the voices from one dominant group (with similar backgrounds and traditions) are consistently heard – while the fresh views and experiences of minorities remain silent.

This is not good medicine nor is it good for people who are being diagnosed with the disease who do not come from “traditional” MS backgrounds (https://n.neurology.org/content/neurology/93/4/176.full.pdf). 

An equal opportunity disease

Historically MS was seen as a disease predominately affecting White women of northern European descent living in high latitudes. This is now changing (Langer-Gould A, Brara SM, Beaber BE, Zhang JL. Incidence of multiple sclerosis in multiple racial and ethnic groups. Neurology. 2013. May 7;80(19):1734–9. Epub 2013/05/08. eng. [PubMed] [Google Scholar]) with African-Americans in particular but also Hispanics/Latinos and Asians being increasingly diagnosed with the disease in the US. 

It also appears MS may present differently in each of these groups – in terms of symptoms, age range and effectiveness of treatment – compared to their White counterparts (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4404283/).

No one, though, knows for sure because minority populations have been frequently overlooked and under-represented when it comes to MS clinical research, says Dr Mitzi Joi Williams, an African-American neurologist and MS specialist based in Atlanta. “We do have some data, but we need better data,” she says. 

This is echoed by Dr Lilyana Amezcua, Associate Professor of Neurology at the University of Southern California, Keck School of Medicine and Dr. Farrah Mateen, Associate Professor of Neurology, Harvard Medical School.

All three doctors point out MS clinical trials (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4404283/), research papers (https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Research/ResearcherToolkit2018.pdf) and biomedical banks ((https://www.mountsinai.org/about/newsroom/2019/mount-sinai-researchers-call-for-more-diversity-in-the-next-generation-of-personalized-medicine) should no longer have individuals of European ancestry as their principle focus.

 ”We need greater diversity and inclusion at all levels in MS. We also need to change our perceptions and attitudes and clarify our own unconscious biases when it comes to research and taking care of ethnic minorities,” says Dr. Amezcua.

Instead they be proportionately representative of the real-world population of patients with the disease.This, they believe, will allow researchers the chance to uncover differences in biology, genetics and disease progression which could lead to personalised treatment and better health care for all. 

One of the best ways to spread this message is through education. “We need to bring attention to the diversity of people who have MS through places like scientific forums.,” says Dr. Williams. “This will allow us to foster collaborations to bridge the gaps in our knowledge that exist – and it will help these populations and may help us find keys to improve care for the general population.”

Over to you ECTRIMS and ECTRIMS.

*Thank you to Romilly Stone

Rachel Horne – @RachelHorne19 – is a journalist with MS.

About the author

Rachel Horne

29 comments

  • what a ridiculous post! Utterly ridiculous. Science is colour blind. Please leave it this way.

    We don’t need diversity in MS – we need solutions, regardless of skin colour.

    One could argue that this is G’s fault ever since he debated Brexit on this blog. Can we focus on science only please and leave PC stuff for the BBC?

  • Quite frankly, I don’t much care if little green men from Mars do the research or make the decisions, as long as the committees make good decisions and the research community find treatments and if possible, a cure.

    White, French/Cornish, AGED and… a woman!! Believe me; try being older and see how that renders you invisible/ineligeable as a research participant. I just shout louder.

  • Rachel,

    “Most of them, I noticed, were White.” Am I bovvered? No. The founding fathers of modern medicine were predominantly from ‘white’ civilisations. Most of the text books, medical breakthroughs and the most prestigious medical education establishments (Royal Colleges….) were created / established by ‘white’ people.

    Inequality can be seen everywhere in the world:

    – 13.4% of the US population are ‘black’, but 81.1% of the players playing professional basketball are black. Is this over-representation by one race? Do the number of black players need to be reduced so that the NBA properly represents the make-up of the general population?

    As at 2017, there have been 902 people who have won a Nobel prize. 22.5% of these people were Jewish even though Jewish people account for some 0.2% of the world’s population. Would you propose stopping Jewish people being considered for Nobel prizes in order to even things up?

    Also, give a thought to people from Chinese heritage. The U.K. had some 430,000 people of Chinese heritage, but just one MP (should be 4-5 given the population). The media never run stories on how underrepresented the U.K. Chinese population is in politics, entertainment, sport, TV. No one asks that the next actor to be James Bond be of Chinese heritage (or Pakistani, Bangladeshi or Indian heritage), yet I’ve seen numerous calls for a black actor to play the next James Bond.

    For whatever reason, races from Europe and Asia created civilisations that have left a lasting impact on the world. European societies have been responsible for most of the ground breaking inventions (electricity, telecoms, IT, medicine, transport….). Asian societies have excelled at improving and mass producing many of these inventions. As a result these societies have prospered. That’s just the way it is. Pulling down statues and having a few more ‘black’ faces at an MS conference won’t change history. As we condemn our white ancestors for atrocities such as slavery, perhaps we should also reflect on their inventions which have saved millions of lives across the world, lead to better quality and longer lives, and have given us the freedoms we have today.

    • Sid I could accuse you of ‘white arrogance’, but I won’t as I am not sure I have met you and I can’t assume you are white, but I guess you are. There are a lot of historical reasons why European empires dominated the world and why their cultures still impact on society to such an extent. It was not always like that. If you are interested in alternative historical perspectives as a counterbalance to your position can I suggest the following books; ‘The Silk Roads: A New History of the World’ by Peter Frankopan and ‘Empire: How Britain Made the Modern World’ by Niall Ferguson. They make you realise it could quite easily have been very different.

    • Sometimes the way history is written is biased. Mathematics was invented in India back in 1200BC and forms the foundation of science, Watson and Crick didn’t discover DNA – Rosalind Franklin’s x-ray diffraction data did and the African-American Henrietta Lacks aka HeLa cells is one of the oldest and most commonly encountered cell lines in science. The list I have provided are but a handful and speak for themselves, sometimes with unsavory outcomes. But, this is not to say that contributions by others is anything less. If science is to move ahead, ideas should be open.

  • #BlackLivesMatter is such a marmite issue, which is why this post is so important.

    By not being inclusive and encouraging diversity we are not tapping into the tapestry of life and alternative worldviews, which are bound to lead to better solutions. The biggest problem we face is not necessarily new ideas and innovations, but the adoption of new ideas and innovations. Diversity and inclusiveness make the rapid adoption of innovations much more likely.

    As we face emerging global shitstorms (pandemics, climate change, etc.) we need to address the lack of diversity ASAP. It is in everyone’s interests.

  • MS research is not just white, it’s biased and elitist. If you aren’t one of the cool kids on the block (in with the right research group) it’s much harder to establish yourself in MS research. I’ve begged for people to support me so I can continue to do my research. I’ve been blocked by researchers of influence who had the ability to help AND hinder my career. It has taken me much more effort to establish myself. Research is definitely not colour blind and as a result good researchers and research ideas get lost to group think, mistakes get made because of less scrutiny of ‘in group’ ideas and work produced. Sadly, this is an academic problem, not just an MS problem. I proudly say I have MS and didn’t do year 12 to make a point of this problem and am outspoken about my views because I won’t be a bystander. Thanks for highlighting it.

    • Some of these academic researchers (not just in MS) are a fickle bunch, I’ve learnt that lesson. One minute you can be praised and the next minute they put you down.

      Good luck with your research Lisa. I have a forever growing list of MS research ideas, that I suspect without having MS would not be so long :@)

  • A very revealing article and although I think that change does not happen overnight, someone has to bell the cat. I myself belong to a minority group (Asian-American, as from India) and in MS, it is still a white man’s game. I have no qualms about that, everyone has EARNED it, but to ignore facts and move on as if nothing happened is sacrilege. We cannot just blame a person’s skin color as the cause of it all. How about commitment from the rest of the crowd to MS ? In the field of Engineering, Google/Adobe Acrobat/Microsoft/Mastercard CEOs are not exactly white, right ? Brilliance is still appreciated, let us not forget that ! They are all Indian men ! How come ?

    I wrote in JAMA Neurology (2014) that the # of African-Americans (now it is tough to admit and understand who is an African-American (AA) since that distinction is critical as we cannot probably apply it to an African man or woman who has emigrated to the US for work, livelihood, etc, and it is the racial/genetic admixture and NOT perhaps African ancestry that tips the scales in favor of increased risk for MS) that in phase 3 clinical trials the #s of enrollees had FALLEN from 1993 to 2006, across clinical trials. How can that be, as time advances ? There are, obviously, other examples. What this creates is a vacuum of sorts and AAs have minimal or no data that drugs work for them. THIS IS THE LARGER PROBLEM. I wrote about this too, in CNS Spectrums.

    The disease phenotype is also more aggressive. Everyone knows this. Many publications note this fact – disease burden, # OCBs in the CSF, C spine involvement, time to a wheel-chair dependency, the works. And yet, everyone plays lip sympathy. The disease is MORE aggressive, malignant, virulent, whatever one labels it. And yet drug companies do practically nothing. Where are the clinical trials just for minorities ? Where are the data-sharing databanks ? Why does everyone hang on to their datasets ? More publications and more grants ? Isn’t that the truth ?

    So, while the recent unfortunate incidents across the US and now the world have begun to galvanize folks to take note of this glaring disparity, I for one feel that change is the need of the hour and NOW. Not handouts, not a place in the sun because there is feeling of guilt in the powers that be but based on merit. It is high time that ideas, wherever they come from, are valued and given equal weight instead of someone looking at a name and rolling their eyes and trashing an application, for instance.

    We also need to acknowledge that just because minorities are given a place at the table that change will happen, miraculously. Like everyone else, you have to take the long road to success. It is as much a responsibility of each one of us as it is for the folks in the majority to take note of the disparities and work to correct them.

  • Contributions to science should be by competence, not quota. In any case, a forum like this should be discussing medicine, not jumping on ideological band waggons.

  • Re. ‘We need greater diversity and inclusion at all levels in MS’, yes and I feel it’s important to consider the following study:

    ‘Age at immigration to England of Asian and Caribbean immigrants and the risk of developing multiple sclerosis.

    Previous studies have shown that multiple sclerosis is very uncommon among Indian and Pakistani immigrants to England but that their children born in the United Kingdom, in the age groups available for study, have a similar risk of developing the disease as occurs in the general British population.

    https://jnnp.bmj.com/content/63/5/565

  • Thank you for another enlightening piece which should be considered as of significant importance to the science community. I admit to being horrified by some of the apparently wilfully ignorant comments below but, of course, they do explain many of the major problems facing us in the world today. Please keep highlighting these issues.

  • Let’s return to the science. The furore caused by this post is way too political. It detracts from the exponential increase in treatments for MS since my diagnosis and the astonishing increase in understanding about MS this century. All brought about by amazing, collaborative researchers, scientists and doctors. By carping, either in the post or the replies, we are losing sight of this.
    Anything less than total respect for diversity and equality should be unacceptable to everyonel, but I fear this post is generating more heat than light.

  • I suspect the barts team has good intentions with this post and thought it would insight a meaning conversion around diversity, inclusion, and equality, and how it ties back to MS. Not sure they achieved their goal (based on the tone in many of the reply’s), but A+ for the effort and willingness to further the global conversion.

  • Thanks for the thought provoking post. I wonder what role drug companies play in the bias towards caucasians and MS? We all know too well that MS is an expensive disease to treat but also reaps big profits for pharma. Do minorities from lower income groups have the access to DMTs as caucasians who may have the financial means to cover the costs? And does this disparity play a role not only in the marketing of MS drugs towards the wealthy but also in the research community as well.

    • Thanks.. Some really interesting questions which I suspect pertains more to the US – and the insurance system there (of which I am not terribly familiar at all). I do know minorities in the US tend to have a lot less access to neurologists – and especially MS specialists – so this may delay getting diagnosis and hence onto treatment. As for drug costs/Medicaid – hopefully a US neuro can jump in here and help….

  • For anyone who’s interested the MS Virtual 2020, the title of this joint Ectrims/Actrims conference there are video round ups of each day on YouTube from MS Translate.

    • Humm, I’m a bit unsure how to add
      To this post but feel compelled to note that inclusivity makes for better science. My teenage daughter expects inclusivity. She likes to laugh at the foils of lack of diversity: such as the first female American astronaut Sally Ride needed to explain to all the males at NASA that 100 tampons was an excessive amount for a week in space. Isnt race just as important as gender representation? I learned much about how race and MS connect from a wonderfully astute podcast by 2 female American MSers, Dawn Morgan and Daana Townshend, who are black. They incorporate interviews with experts in the field and their own experiences with MS. AND they eloquently explain their personal perspectives. No matter your race or gender, I think you will enjoy and learn about how to live well with MS from tbeir podcast. http://myelinandmelanin.com/podcast/

      • Thanks so much for this. I have just finished listening to one of the podcasts from Myelin and Melanin… really enlightening. Like you, I believe inclusion and diversity is essential for better medicine. How could it not be? The more varied the better.
        Best,
        Rachel

  • Wow!

    When I first started reading the article to be honest, as a person with MS, I was wondering about it’s relevance, to me I simply want the best treatment from the best people, regardless of ethnicity. The education, promotion, treatment of medial specialists, I’ sure is an issue which affect who get’s to be seen to perceived to be the best by being given a platform.

    But what’s alarming is the comments to follow, the level of offence, ignorance and arrogance in some of the comments is stunning. I’d sure as hell hope never to be treated by anyone who assumes that based on the colour of my skin, I’m probably not likely to continue anything of significance to society. Because that’s what white people tend to do and have always done!

    The self congratulation and arrogance that your ACCESS to education and PRIVILEGE are what have led to scientific breakthroughs in history is alarming and your ignorance on the actual history of medical breakthroughs, science and math, the whitewashing and the significant contributions made by black people actually make me question the greatness of your education after-all!

    It’s your field, maybe you should do the research.
    You might be amazed what you find rather than sticking with your ignorant preconceived ideas. So do I care who’s on your panel? Not really. Do I think it’s a BLM matter, not really, do I think some of you need to go read some books? Hell yeah.! Maybe get out there and look beyond the text book handed to you in college, the research paper given to you (always GIVEN TO YOU) and use your wonderful big brains to put together that all sorts of people have advanced medicine, some against amazing hardships, oppression and deliberate suppression, advancing medicine to where it is including black people and all sorts of people have the ability to take it to new heights moving forwards.

    Personally I’d never want a specialist closed minded about history and race to be responsible for my health. Closed minded signifies rigid to me. Open-minded seems more diverse, forward thinking, they just might have the potential to make significant discoveries and breakthroughs that help us all, those of you not so blinkered on here, thank you.

    Do the research, be inquisitive, open your mind. But maybe I’m wrong, because after all I’m clearly not that bright according to some of you, I have a chronic illness – Multiple Sclerosis, Legions on the brain, and I’m black. So you brush yourself off and shake your clever head at my stupidity, do nothing and stay stupid AF.

  • Most of the lead scientists in Europe and America are white simply because the non white population who migrated on mass towards the end of the last century have not yet filtered up the chain as they gain rank. But if you look at the researchers doing the actual lab work and making the discoveries, you will find white colleagues are in the minority. Any endeavour involving brain power is primarily dominated by South Asians, Majority being Indian and Chinese. Consequently China now believes its only long term threat to world hegemony 8s India that can match it in brain power. So I contest that positive discrimination is needed to address the dwindling number of white researchers.

  • Thanks for an excellent post Rachel. I understand the howls from the “all lives matter”, facts is facts cant rewrite history types be loud but we shall overcome. The global majority is not white let’s just bear that in mind. To be an ally of anti racism is to be on the right side of history.

By Rachel Horne

Translate

Categories

Recent Posts

Recent Comments

Archives