October 4th, 2013

Nothing about us without us

nothingaboutus

I want to give over a guest post to Gerry Stimson, David Dorn and Rick Lines to reproduce their excellent rejoinder to Professor Martin McKee. This is far more than a richly deserved put-down to the casual arrogance of McKee.  It includes a quite fundamental challenge to the health, medical and campaigning organisations that work on ‘tobacco control’.  Why are they so far apart from the people they are supposedly trying to save or help? I like the slogan adopted by people with HIV/AIDS as they dealt with the huge interests chasing funding,  with some bringing abstinence-only or other ideologically driven programmes into the field: nothing about us, without us.

The response is published on the BMJ website, but you can also read it here and comment freely. Let us know what you think in the comments. But please keep it polite!

Martin McKee seems taken aback the response he has had from e-cigarette users about his article. Perhaps to many of them he appears a remote and unaccountable academic with easy access to influential publications in which he can declare opinions that bear no relation to their lived experience. Maybe they are concerned that McKee wishes to restrict or ban new technologies that they personally have found transformative to their health and welfare. It is easy to see why they may be agitated.

The tobacco control field has been marked by its lack of engagement with smokers. Understandable perhaps given that in the past the main consumer groups were pro-smoking. The war on the tobacco industry was also a war on smokers. Yet the legitimate concerns of public health advocates about the tobacco industry and its products had the unintended consequence of also marginalising and stigmatising smokers. Electronic cigarettes are the big game changer. And the rise in their use has been marked by the rise of a new social activism by e-cigarette users (‘vapers’). User Forums have been building alongside the growth in use of electronic cigarettes, but social activism took off across Europe from the beginning of this year. E-cigarette users are deathly scared about the Medicines and Health Care Products Regulatory Agency and European proposals in the Tobacco products Directive to regulate electronic cigarettes as medicines. They are also outraged that their views have not been considered by the MHRA, Department of Health and the European Commission.

The preamble of the WHO Constitution states that ‘Informed opinion and active co-operation on the part of the public are of the utmost importance in the improvement of the health of the people’ [1]. WHO Director-General Dr Margaret Chan has referred to ‘the power of civil society and the activist community to generate the grassroots pressure that can ignite policy change’ [2].  In most public health fields, community engagement is the norm: we welcome it, encourage it, and we learn from it. In AIDS, for example, engagement with affected populations has the highest priority – summed up in the slogan ‘nothing about us without us’. This slogan was borrowed from the field of disability and indicates the idea that policy should not be decided without the full and direct participation of people affected by that policy. Martin McKee is surprised by the response from electronic cigarette users. The strength of feeling aroused should be cause for reflection and engagement rather than as McKee puts it ‘academic analysis’.

Many public health experts and organisations in the tobacco control appear to have little understanding of the significance of the emergent population of e-cigarette users and their concern for protecting their health. We ignore public heath activists at our peril: Michel Sidibé Executive Director of UNAIDS has written of ‘the power of civil society to focus and generate transformational change’ [4]. UNAIDS documents are replete with statements about ‘meaningful and respectful partnership work with civil society’. That doesn’t happen in the tobacco control field.  Unfortunately, most tobacco control organisations are way behind the curve on e-cigarette consumers and have no strategy for engaging with these populations. Making light of e-cigarette users (Martin McKee has tweeted about ‘e-cig trolls’ [4]), patients, consumers and others affected by public health policies is counter-productive. Mary Robinson Former UN High Commissioner for Human Rights sums it up:

‘If only those with power … would listen and incorporate the experience of those who have first hand knowledge of the reality of the situation on the ground – the results would transform the ideas of leadership and decision-making’.

Gerry Stimson, Emeritus Professor Imperial College London

David DornVapoutrails.tv

Rick Lines, Harm Reduction International

Competing interests: GS was member of the National Institute for Health and Care Excellence guidelines development group on tobacco harm reduction; his company Knowledge-Action-Change has received a smoking research feasibility grant from a company developing a nicotine product. DD runs Vapoutrails.tv which receives advertising from electronic cigarette companies.

[1] World Health Organization, ‘Preamble’ Constitution of the World Health Organization:

[2] WHO (2008), ‘Launch of the Final Report of the Commission on Social Determinants of Health’ [statement to the press, Geneva, Switzerland, 28 August]

[3] UNAIDS guidance for partnerships with civil society, including people living with HIV and key population, 2012. Joint United Nations Programme on HIV/AIDS (UNAIDS).

[4] Twitter [email protected] 6 Sept 2013

[5]  M. Robinson (1996) ‘Empowerment Through Partnership’ [foreword] in B. Harbor, P. Morris and I. McCormac (eds) Learning to Disagree – Peace and Economic Development in Ireland Dublin: UNISON and IMPACT.

18 comments to Nothing about us without us

  • […] if they could, and don’t really understand the modern and assertive rallying cry ‘nothing about me, without me‘ in public […]

  • […] to engage consumers, to learn from their insights and to recognise the strength of their view: nothing about me without me.  I hope you will convene a consumer panel, appoint a consumer champion or something similar to […]

  • […] respect the dictum “nothing about us, without us“, and we believe that many important insights come from listening to and understanding people […]

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  • Sue Skillicorn

    This response rings true. Many of the comments disparaging ecigarettes seen in the media either come from those who do not smoke, or those who smoke, but have been asked to try an ecigarette in order to write an ‘interesting’ piece for their publication. It is no surprise that these ‘interesting’ pieces usually state that the ecigarette was ineffective and, in so many words, ‘useless’. Those of us who tried the ecigarette and almost immediately gave up tobacco with a sigh of relief are not listened to, or our testimony is some how seen as invalid. I speak as someone who smoked for 50 years.

    How can social problems ever be ameliorated if no one listened to those who have found a way to leave those problems behind?

  • Bill Godshall

    Many thanks for this response to McKee, who (like most other e-cig prohibitionists and propagandists) has been on my Tobacco Harm Reduction e-mail list for many years.

    Here in the US, drug industry funded e-cig prohibitionists at CTFK have similarly stooped to “guilt by association” to deceitfully portray c-cigs as cigarettes, and e-cig companies as cigarette companies from decades ago to lobby for the FDA “deeming” regulation that would once again ban e-cig sales and protect cigarette markets.
    http://www.tobaccofreekids.org/tobacco_unfiltered/post/2013_10_02_ecigarettes

  • Dodderer

    In his ‘expert’ paper for NICE, Professor Hastings opined that THR in general and ecigs in particular were causing ripples on the calm millpond of tobacco control.

    Those ecig users who have had the temerity to question tobacco control policies have variously been dismissed as ‘tobacco industry schills’ and ‘ecig trolls’.

    Perhaps the millpond was only calm because of the intellectual vacuum at its centre?

  • lizzie

    Smokers have been quite passive when it comes to bans and so on, because they do really believe smoking is bad for them. I think the anti-smokers will find they’ll have a much harder time with vapers because they don’t believe they’re doing any harm to themselves or others. Anti-smokers forget that vapers have non-smoking family members and friends who support them in stopping smoking.

    No vaper wants their e cigs classed as a medicine because they know they will be forced back to smoking. So just who are these people representing. They certainly don’t speak for vapers or their families.

  • Roger Hall

    Sue Wilson’s post highlights the public misconception between smoking, tobacco, and nicotine. Until the public are reeducated to understand that nicotine is not necessarily harmful and is no different to caffeine than the value of accepting the use of nicotine as a valid freely chosen alternative consumer product to compete with tobacco cigarettes is difficult.

  • Sue Wilson

    Good article, thanks. Being relatively new to this debate, things that are blindingly obvious to you old hands had not occurred to me.

    For example, I had not previously considered the fact that tobacco control policy, and evaluations, do not fit well with the policy of consumer involvement. Although there is an ongoing enthusiasm, in the UK, to engage users/patients/consumers (whatever the current politically correct term is) in healthcare evaluations, there is also a well established aversion to working with, and receiving funding from, tobacco companies. No-one takes too much notice of the tobacco smoker – after all, they are just a weak willed addict to nicotine; it is in their own and the public’s interests to stop them smoking and to stop new addicts being generated (whilst maintaining tax revenue and keeping big pharma happy, of course).

    Taking the views of the vaping community seriously may be adversely affected by our association with both tobacco smokers and tobacco companies. I do appreciate the concerns of public health specialists, of which I was one, that tobacco companies will buy up the e-cig companies and use them as a means to promote smoking. The problem is, what do we do about this? We have already seen one of the big cigalikes being bought by a tobacco companay and the circulation of adverts that attempt to glamourise the use of a cigalike. Whilst I am not anti-smoking, I was a smoker myself for 40 years, I do believe that it is possible that the views of vapers may only be listened to if and when vaping is perceived to be an alternative nicotine delivery system, not an alternative way of smoking. How such a sea change in views is to be achieved, however, is not clear to me

  • Andy Morrison

    Thanks Clive, Dave & Jerry. Without you guys we would be unable to combat the likes of McKee and Glantz who clearly have not grasped or don’t want to grasp reality.

    From a very grateful vaper.

  • ed west

    Excellent! Thanks Clive, Dave Dorn, Gerry Stimson and Rick Lines! We vapers are behind you and your support teams all the way!

    I had to share the picture on fb mav. I hope you don’t mind.?

  • mav

    This is a really great post. But you can expect Chapman, Glantz and Mckee to begin attacking ad hominem.

    You can’t deny though, they look fabulous in white.

  • An excellent, and intensely relevant piece. Thanks to the authors and Clive for hosting a commentable alternative to the BMJ site.

    I have been struck by the fluff, bluster and (surely wilfully) disengenuous nature of Martin McKee’s comments regarding electronic cigarettes, not to mention those of Stanton Glantz. Regulation of nicotine containing products is a vital topic across the world and the dismissive, paternalistic attitude of such commentators is deeply offensive to an informed and passionate vaper such as myself; a smoker of 35 years that has now entirely switched to vaping as a viable, enjoyable, and virtually risk-free alternative.

    McKee and Glantz are doing harm by their utterances and are evidently unable to conceptualise how or why.

    If I may analogise their contribution to the e-cigs discussion… there is evidence and a scientific basis for the belief that red sunsets are caused by light travelling through atmospheric particles. McKee and Glantz would have us believe they are caused by communism.

    They simply do not understand.

  • Twiglet

    Well said Gerry, Dave and Rick, it’s terrific to have you fighting our corner, especially when the attacks are made in places to which we don’t have access.

    Self satisfied gloating arrogance seems to be a feature of Tobacco Control advocates, did anyone see the conference webcast from San Fransisco last night? All of the speakers gave reasoned and interesting talks, even those I generally disagree with, and then up jumps Glantz with his ignorant opinions of the work of people whose intellects clearly eclipsed his. Why is it necessary? Australia seems to have one too, do all countries get one each?

  • Dodderer

    All monopolies operate against the public interest – tobacco control is no different.This summed it up perfectly for me

    ‘If only those with power … would listen and incorporate the experience of those who have first hand knowledge of the reality of the situation on the ground – the results would transform the ideas of leadership and decision-making’.

    It seems we’ve been saying this for 9 months

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