New power versus old: to beat antivaccination campaigners we need to learn from them—an essay by Kathryn Perera, Henry Timms, and Jeremy Heimans
BMJ 2019; 367 doi: https://doi.org/10.1136/bmj.l6447 (Published 21 November 2019) Cite this as: BMJ 2019;367:l6447
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Maya Goldenberg writes [1]:
"But vaccine hesitators and refusers—the subjects of many social scientific studies—consistently couch their non-scientific knowledge claims about vaccines (as dangerous, unnecessary, ineffective, etc.) in sincere misgivings about conflicts of interest in medical research and health care practice, and evidence that science does not work in the public interest."
Well, Goldenberg apparently has confidence that she knows something that this recalcitrant class does not, but as with the authors of the original article [2] it is not clear what body of evidence she is citing for the effectiveness and particularly the safety of the products - rather than acknowledge that they are industrial products and can go wrong. To hold, for instance, the a priori view that they cannot and do not go wrong is in itself to preempt knowledge, and you will never learn what happens humanly or scientifically speaking (absence of evidence is not evidence of absence). One might think it is a particularly unsafe way to proceed.
However, it is not my finding that posters on social media are ignorant of science or basing their criticisms just on their experience (which should still be mightily important) or prejudice: clearly a lot of them are quite capable of reading science and not all of it is favourable, or gives a good account of the industry. To cite some examples: there exists a massive critique of the safety of HPV vaccines in published literature [3-9], of the safety of adjuvants such as aluminium salts [10-14], the ineffectiveness of flu vaccines, the Pandemrix/narcolepsy debacle, the dangers of DPT [15]. There is the rather basic problem that most products never seem to have been subject to double blind placebo testing for safety [16].
Issues like "conflict of interest and health care practice" are not trivial. People will be troubled that even where companies have been fined billions of dollars it does not affect the careers of their executives or their ability to trade. In the case of healthcare practice informed consent in its full meaning (acknowledging officially documented risks and the right to choice in medical interventions) and listening to patients and their families when things go wrong - instead of aggressive or patronising dismissal - would be a good start.
While I share Goldenberg's disappointment with the terms of Perera et al's article I see no escape in her letter from it's fundamental ad hominem circularity - it simply does not present fairly or adequately the substance of the general complaint against the vaccine lobby, and her dismissal is therefore far too easy a victory.
[1] Maya J Goldenberg, 'Re: New power versus old: to beat antivaccination campaigners we need to learn from them—an essay by Kathryn Perera, Henry Timms, and Jeremy Heimans', 30 Novemver 2019, https://www.bmj.com/content/367/bmj.l6447/rr-7
[2] 'New power versus old: to beat antivaccination campaigners we need to learn from them—an essay by Kathryn Perera, Henry Timms, and Jeremy Heimans', BMJ 2019; 367 doi: https://doi.org/10.1136/bmj.l6447 (Published 21 November 2019)
[3] Jørgensen L, Gøtzsche PC, Jefferson T.'The Cochrane HPV vaccine review was incomplete and ignored important evidence of bias', BMJ Evid Based Med. 2018 Oct;23(5):165-168. doi: 10.1136/bmjebm-2018-111012. Epub 2018 Jul 27
[4] Lars Jørgensen, Peter Doshi, Peter Gøtzsche, Tom Jefferson, 'Challenges of independent assessment of potential harms of HPV vaccines', BMJ 2018; 362 doi: https://doi.org/10.1136/bmj.k3694 (Published 24 September 2018)
[5] Lee SH, 'Detection of human papillomavirus (HPV) L1 gene DNA possibly bound to particulate aluminum adjuvant in the HPV vaccine Gardasil, J Inorg Biochem. 2012 Dec;117:85-92. doi: 10.1016/j.jinorgbio.2012.08.015. Epub 2012 Aug 30.
[6] Lee SH, 'Melting profiles may affect detection of residual HPV L1 gene DNA fragments in Gardasil®.', Curr Med Chem. 2014 Mar;21(7):932-40.
[7] Mary Holland, Kim Mack Rosenberg and Eileen Iorio, 'The HPV Vaccine On Trial: Seeking Justice for a Generation Betrayed' with an introduction by Luc Montagnier, Skyhorse, 2 October 2018
[8] Peter Doshi, Tom Jefferson, Mark Jones, Kyungwan Hong, Larissa Shamseer, Haeyoung Lee, O’Mareen Spence, Florence Bourgeois, 'Call to action: RIAT restoration of a previously unpublished methodology in Gardasil vaccine trials', 11 January 2019, https://www.bmj.com/content/346/bmj.f2865/rr-7
[9] Gayle Delong, ' A lowered probability of pregnancy in females in the USA aged 25–29 who received a human papillomavirus vaccine injection', Journal of Toxicology and Environmental Health, Volume 81, 2018 - Issue 14, https://www.tandfonline.com/doi/full/10.1080/15287394.2018.1477640
[10] Emma Shardlow, Matthew Mold and Christopher Exley, 'Unraveling the enigma: elucidating the relationship between the physicochemical properties of aluminium-based adjuvants and their immunological mechanisms of action,', 7 November 2018, Allergy, Asthma & Clinical Immunology201814:80 https://doi.org/10.1186/s13223-018-0305-2
[11] Gerwyn Morris, Basant K. Puri, and Richard E. Frye, ‘The putative role of environmental aluminium in the development of chronic neuropathology in adults and children. How strong is the evidence and what could be the mechanisms involved?’ Metab Brain Dis. 2017; 32(5): 1335–1355. Published online 2017 Jul 27. doi: 10.1007/s11011-017-0077-2, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5596046/
[12] Matthew Mold, Dorcas Umar, Andrew King, Christopher Exley, ‘Aluminium in brain tissue in autism’, Journal of Trace Elements in Medicine and Biology Volume 46, March 2018, Pages 76-82, https://www.sciencedirect.com/science/article/pii/S0946672X17308763
[13] Christopher Exley, 'An aluminium adjuvant in a vaccine is an acute exposure to aluminium', Journal of Trace Elements in Medicine and Biology, Available on-line 18 September 2019, https://www.sciencedirect.com/science/article/pii/S0946672X19304201?via%...
[14] Emma Shardlow, Matthew Mold, Christopher Exley, 'The interaction of aluminium-based adjuvants with THP-1 macrophages in vitro: Implications for cellular survival and systemic translocation', Journal of Inorganic Biochemistry
Volume 203, February 2020, 110915, https://www.sciencedirect.com/science/article/pii/S0162013419305719
[15] John Stone, 'The Benefits of DPT', 10 July 2019, https://www.bmj.com/content/366/bmj.l4460/rr-0
[16] John Stone, 'Re: Response to John Stone (2019 Jul 24)', 29 July 2019, https://www.bmj.com/content/365/bmj.l4291/rr-37
Competing interests: AgeofAutism.com, an on-line daily journal, concerns itself with the potential environmental sources for the proliferation of autism, neurological impairment, immune dysfunction and chronic disease. I receive no payment as UK Editor
Better than adopting the social media techniques of the so-called “new power” [1], the case for vaccination could get a needed boost by attending to the conditions that first precipitated this challenge to the old knowledge order. There is no shortage of editorializing on the war on science [2] , the death of expertise [3], post truth [4], and post-fact [5], all of which lament the downgrading of old power—the scientists, the moderns, the knowers of truth—and the resulting proliferation of misinformation. But vaccine hesitators and refusers—the subjects of many social scientific studies—consistently couch their non-scientific knowledge claims about vaccines (as dangerous, unnecessary, ineffective, etc.) in sincere misgivings about conflicts of interest in medical research and health care practice, and evidence that science does not work in the public interest. This should be the point of focus by the old power, as daily news stories of the mis-marketing of opioids [6] and the medical device scandal [7] inform public attitudes about the vaccine consensus and other expert pronouncements.
The “old power” institutional apparatus of scientific authority has lost the publics’ trust, and Instagram influencers have now filled the void for parents who struggle with the question of vaccines. With all of the investment in vaccine outreach, parents still frequently claim that they don’t know what to do, or who to believe. The scientific consensus is not fulfilling its public function, and this is a problem of scientific governance rather than social media. Those of us invested in public health and science for the people (including vaccination) should direct efforts towards building and maintaining the public trust [8,9]. Perera et al’s [1] recommendations to adopt social media influence techniques only rings hollow.
[1] Perera K, Timms H, Heiman J. New power versus old: to beat antivaccination
campaigners we need to learn from them. BMJ 2019;367:l6447 doi: 10.1136/bmj.l6447 (Published 21 November 2019)
[2] Otto SL. The War on Science: Who's Waging It, Why It Matters, What We Can Do About It.Minneapolis: Milkweed Editions, 2016.
[3] Nichols T. The Death of Expertise: The Campaign Against Established Knowledge and Why it Matters. Oxford: Oxford University Press, 2017.
[4] McIntyre L. Post-Truth. Cambridge: MIT Press, 2018.
[5] Fukayama F. The emergence of a post-fact world” Pacific Standard (Jan 12 2017).
[6] Parsons L. J&J found liable in first opioid mis-marketing verdict. PM Live (Aug 27 2019). http://www.pmlive.com/pharma_news/j_and_j_found_liable_in_first_opioid_m...
[7] International Consortium of Investigative Journalists. 2018. Implant Files. https://www.icij.org/investigations/implant-files/
[8] Goldenberg MJ. Forthcoming. A Crisis of Trust: Vaccine Hesitancy, Science, and Public Debate. Pittsburgh: University of Pittsburgh Press.
[9] Goldenberg MJ. 2019. Vaccines, values, and science. CMAJ 2019 191 (14) E397-E398; DOI: https://doi.org/10.1503/cmaj.181635
Competing interests: No competing interests
Salisbury and Oliver recently remarked on fear levels in medicine. (1,2 ) Are we partly to blame? (3)
This article mentioned “deadly measles” although it’s mortality rate had dropped by more than 99% before vaccination was introduced.
“To beat the anti vaccine campaigners” with added talk of “our only weapons” are scarcely peace loving sentiments. With two pages devoted to “new power” and “old power”, there was insufficient space to mention the elephant in the room, corporate power?
Perhaps the authors should go out and meet more people. Maybe people like me, lifetime GPs and part time pharma salespeople, and the parents we meet of allegedly vaccine damaged children.
Anecdotally, in rural East Africa, recently, I have had clear reports of cases of the development of asthma in children “ ..after vaccination”. The mothers in these cases are unlikely to have read the paper by Hurwitz et al (4), suggesting a 50% increase in asthma incidence after DPT - which is still used in Africa.
Instead of the authors’ prescription of a daily dose of “new power”, perhaps we should consider a daily dose of humility, and insightful reflection on “How did we get here?“
1 Helen Salisbury: Reasons to be fearful. BMJ 2019; 367: l5786
2 David Oliver: Fear in medical practice. BMJ 2019; 367: l6030
3 https://www.bmj.com/content/367/bmj.l6030/rr
4 Eric Hurwitz et al. Effects of Diphtheria-Tetanus-Pertussis or Teta’”nus Vaccination on Allergies and Allergy-Related Respiratory Symptoms Among Children and Adolescents in the United States. Journal of Manipulative and Physiological Therapeutics Volume 23 • Number 2 • February 2000
Competing interests: Flight costs reimbursed by EC.
Kathryn Perera, Henry Timms and Jeremy Heimanns write [1]:
"Those wishing to encourage vaccination need to identify and
amplify the stories that emerge from the real lives and lived
experiences of people in their communities (to start, they need
to listen for them). It is no coincidence that the most effective
climate advocacy in the world right now comes from the
improvisations and stories of a 16 year old girl rather than the
strategic plans of a generations old institution."
So, it is a notable coincidence that on the very same day that this article was published Thomas Breuer, Chief Medical Officer of GlaxoSmithKline (GSK), published on the World Economic Forum website an article "Why we need to start a new pro-vaccine movement" [2] which was also extolling the Greta effect:
"Greta goes to show that a single voice, with a powerful pro-science message, can be amplified worldwide using modern technologies. Furthermore, she shows that an awakened collective voice can start to affect everyday behaviours and inspire real changes for the benefit of our society as a whole."
This is all very well but what are governments going to do to persuade people that their concerns about product safety - which are scarcely "anti-science" - are being met beyond trying to silence them, while playing one part of the population off against another ?
And if such a grassroots movement were suddenly now to take off, might it seem a little less than spontaneous [3]?
[1] 'New power versus old: to beat antivaccination campaigners we need to learn from them—an essay by Kathryn Perera, Henry Timms, and Jeremy Heimans', BMJ 2019; 367 doi: https://doi.org/10.1136/bmj.l6447 (Published 21 November 2019)
[2] Thomas Breuer, 'Why we need to start a new pro-vaccine movement' World Economic Forum 21 November 2019, https://www.weforum.org/agenda/2019/11/importance-of-immunization-and-va...
[3] Peter Doshi, 'The unofficial vaccine educators: are CDC funded non-profits sufficiently independent?',
BMJ 2017; 359 doi: https://doi.org/10.1136/bmj.j5104 (Published 07 November 2017)
Cite this as: BMJ 2017;359:j5104
Competing interests: AgeofAutism.com, an on-line daily journal, concerns itself with the potential environmental sources for the proliferation of autism, neurological impairment, immune dysfunction and chronic disease. I receive no payment as UK Editor
This article focuses on a significant issue of our time, one which most would hope had not reached our shores.
The issue at hand is not the "vaxxers" vs "anti-vaxxers", but the disaster of living in a "post-truth" society. (1)
It pervades every aspect of our lives; from the bluster and posturing of politicians who now operate with impugnity, knowing that should any of their misdemeanours be brought to light they may simply deny under the blanket of "fake news". To the flagrant disregard for the opinion of doctors seen during the junior doctor contract dispute by the then health secretary Jeremy Hunt, and the current posturing seen by the incumbent health secretary, all designed to erode the trust the public have for the medical profession. (2)
It is hardly surprising then, when public leaders so brazenly attack those within the profession, that the academic efforts to allay the fears of those who oppose vaccines is only seen to fuel the conspiracy.
It is becoming more apparent, throughout the press of today, that efforts at "balance" are undermining the value of truth and common sense. When those who believe the earth is flat are given the same airtime as qualified scientists and astronauts who have literally seen the earth from space, I fear we are as doomed as King Knut, trying to hold back an insuppressible tide of opinion that is given the same validity as fact. (3)
There is however some hope in this regard; efforts are being made, throughout all aspects of academia, to improve the quality of peer-reviewed research. This effort can only succeed with the combined will of all those involved in the process.
If peer-reviewed research can remain as a bastion, cutting through the dense fog of ignorance, whilst maintaining its integrity, then perhaps the "post-truth" era can be condemned to the history books before it further poisons our society and our profession.
1. Gay Alcorn (27 February 2014). "Facts are futile in an era of post-truth politics". The Age. Retrieved 20 November 2019
2. Gove, Michael (3 June 2016). "Britain has had enough of experts, says Gove". Financial Times. Retrieved 20 November 2019
3. Tom Fish (Sept 4 2019) "Flat-Earthers: Richard Dawkins takes on ‘anti-experts’ criticising Big Pharma". The Express. Retrieved 20th November 2019.
Competing interests: No competing interests
Thank you to John Stone for reminding us of legitimate vaccine safety concerns, so often overlooked in campaigns to neutralize the "anti-vaxxers."......Stone referred to a report of an infant with Kawasaki disease. (walesonline.co.uk/ 21 Nov 2019) Rowan Buckley's illness apparently followed his first set of Immunizations, a potent combination of DTap, HepB, Hib, IPV, PCV13, Rotavirus, and Meningococcal B vaccines.
Kawasaki disease first appeared in the 1960s, and its frequency in developed nations marched upward right along with the expansion of the immunization schedule. It is a serious immune disorder that has been associated with several vaccines in clinical trials and case reports, including Hepatitis B, Rotavirus, Yellow fever, Pneumococcal conjugate, Influenza, and Group B meningococcal vaccines. Kawasaki disease is uncommon; it is severe; its cause is unknown; finally, it occurs predominantly in young children who are being intensively vaccinated. In spite of these distinctive features, vaccinations are almost never mentioned in general discussions of Kawasaki disease, and fewer than one in 100 cases are reported to VAERS, the adverse event reporting system managed in the US by the CDC and the FDA.
There are at least two other "mystery diseases" whose associations with vaccinations have never been resolved, one way or the other, by unbiased and properly controlled trials: SIDS and acute flaccid myelitis/AFM.
Competing interests: No competing interests
Regarding the remarks in my previous letter [1] on Bexsero and Kawasaki disease, supposing a birthrate of 650 thousand [2] this could result in the dispensing of >1.8 million doses of Bexsero a year to the infant population for the four years since it was introduced in 2015 [3] or above 7 million doses to date. In turn might result according to the figure of 1 in 1,000 for Kawasaki disclosed in the PIL in more than 7,000 additional cases of the disease in the UK infant population over the period.
According to the NHS website [4]:
"Around 25% of children with Kawasaki disease who don't receive treatment – because the condition has been diagnosed incorrectly, for example – go on to experience heart-related complications.
"The risk of developing complications is reduced for children who receive intravenous immunoglobulin (IVIG) to treat Kawasaki disease.
"The heart-related complications associated with Kawasaki disease are serious, and may be fatal in 2 to 3% of cases that go untreated.
"Children under the age of 1 are known to be at higher risk of serious complications."
So, the target population for Bexsero is the population apparently most at risk from harm from Kawasaki disease. Parents are legally entitled to know that their child has a ~1 in 333 risk of developing Kawasaki disease over a course of 3 shots, that Kawasaki disease is serious, and be warned to look out for signs. This should be an instance of a reasonable and legitimate concern on the part of the public and not dismissed [5]. Some may consider that it poses a greater risk than measles which has been talked about so much this year. Is compliance more important than safety?
[1] John Stone, 'An argument already lost by default?', 22 November 2019, https://www.bmj.com/content/367/bmj.l6447/rr
[2] ONS, ' Births in England and Wales: 2018,' https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarri...
[3] Cath Jackson, Joanne Yarwood, Vanessa Saliba, Helen Bedford, 'UK parents’ attitudes to MenB vaccination: A qualitative analysis' , https://bmjopen.bmj.com/content/7/4/e012851
[4] NHS, Kawasaki disease, Complications, https://www.nhs.uk/conditions/kawasaki-disease/complications/
[5] 'New power versus old: to beat antivaccination campaigners we need to learn from them—an essay by Kathryn Perera, Henry Timms, and Jeremy Heimans', BMJ 2019; 367 doi: https://doi.org/10.1136/bmj.l6447 (Published 21 November 2019)
Competing interests: AgeofAutism.com, an on-line daily journal, concerns itself with the potential environmental sources for the proliferation of autism, neurological impairment, immune dysfunction and chronic disease. I receive no payment as UK Editor
There is here an immense failure to engage - we have the stereotyping ad hominem of "antivaccination campaigners" and the people disapproved of (ie Shanelle Cartwright, Suzanne Humphries, Andrew Wakefield etc.) [1]. The authors know who they do not like but as the late Rt Hon Tony Benn would say "what about the ishoos (issues)"? If they insist on the safety of the vaccine project, what body of evidence are they citing? Earlier correspondence here has pointed to unwillingness on the part of the NHS to even make available or discuss the contents of PILs (patient information leaflets) [2]. There is here a monumental effort to stop people talking but not to address full-on what they are talking about, and the more oblivious of human concern and dictatorial it becomes the more resistance there will surely be: the internet is only the medium, and as we have seen the NHS CEO is keen even to stop people talking at the school gates [3].
I was struck last night by a report in WalesOnline [4]:
Kady-Laura Alldis said her 11-week old son Rowan Buckley started deteriorating on Thursday, November 7 and was taken by ambulance to A&E the following Sunday...Kady-Laura, from Caerphilly , said: "No-one knows anything about Kawasaki disease and there isn't enough information out there, but it's becoming increasingly common and more children are being diagnosed with it...Rowan started getting "a bit grumpy" following his immunisations and was sleeping far more than normal...He didn't wake up for his bottles, and he cried when we tried to move him or pick him up to give him cuddles," she added...Then slowly he started not responding to us. His temperature was up and he just wasn't himself."
Why is Kawasaki disease increasingly common? I do not know for certain but parents should surely be warned in the PIL for Bexsero Men B vaccine (routinely administered at 8 weeks, 16 weeks and 1 year) it states that it causes Kawasaki disease in up to 1 in 1000 administrations [5,6].
Hard-nosed denial or being doctrinaire will not win hearts and minds.
[1] 'New power versus old: to beat antivaccination campaigners we need to learn from them—an essay by Kathryn Perera, Henry Timms, and Jeremy Heimans', BMJ 2019; 367 doi: https://doi.org/10.1136/bmj.l6447 (Published 21 November 2019)
[2] Responses to Iacobucci, 'Child vaccination rates in England fall across the board, figures show', https://www.bmj.com/content/366/bmj.l5773/rapid-responses
[3] John Stone, 'Re: Mandatory childhood vaccination could cause “irreparable damage,” says expert panel', 12 October 2019, https://www.bmj.com/content/367/bmj.l5995/rr
[4] Mark Smith, 'Kawasaki disease: Baby's traumatic battle with devastating condition that's becoming increasingly common', WalesOnline 21 November 2019, https://www.walesonline.co.uk/news/health/kawasaki-disease-caerphilly-he...
[[5] Bexsero PIL, https://www.medicines.org.uk/emc/files/pil.5168.pdf
[6] John Stone, 'Re: Child vaccination rates in England fall across the board, figures show', 4 October 2019, https://www.bmj.com/content/366/bmj.l5773/rr-12
Competing interests: AgeofAutism.com, an on-line daily journal, concerns itself with the potential environmental sources for the proliferation of autism, neurological impairment, immune dysfunction and chronic disease. I receive no payment as UK Editor
Unfortunately, the Echo Chambers of Public Health
Dear Editor
While I congratulate Murray Forsyth [1,2] and Maya Goldenberg [3,4] on having their letters promoted to the hard edition, if they or the journal [5] can only deal with people's concerns about vaccine safety - which derive both from personal experiences and published scientific data - by disparaging them, a yawning gap must inevitably open up between policy and reality. While Goldenberg ignored my letter responding to her [6] she is wrong to invoke 'scientific authority'. Medicine, if it is ultimately a science at all, is practiced on people and to cut of their voice is to short circuit or destroy the knowledge base. The echo chambers of social media are, I fear, as nothing compared to the echo chambers of public health.
[1] Murray G Forsyth, 'Re: New power versus old: to beat antivaccination campaigners we need to learn from them—an essay by Kathryn Perera, Henry Timms, and Jeremy Heimans', 24 November 2019, https://www.bmj.com/content/367/bmj.l6447/rr-4
[2] Murray G Forsyth, 'Post-truth era is destroying society and medicine', BMJ 2019; 367 doi: https://doi.org/10.1136/bmj.l6932 (Published 16 December 2019)
[3] Maya J Goldenberg, 'Re: New power versus old: to beat antivaccination campaigners we need to learn from them—an essay by Kathryn Perera, Henry Timms, and Jeremy Heimans', 30 Novemver 2019, https://www.bmj.com/content/367/bmj.l6447/rr-7
[4] Maya J Goldenberg, 'Antivaccination movement exploits public’s distrust in scientific authority'
BMJ 2019; 367 doi: https://doi.org/10.1136/bmj.l6960 (Published 17 December 2019)
[5] 'New power versus old: to beat antivaccination campaigners we need to learn from them—an essay by Kathryn Perera, Henry Timms, and Jeremy Heimans', BMJ 2019; 367 doi: https://doi.org/10.1136/bmj.l6447 (Published 21 November 2019)
[6] John Stone, 'Re: New power versus old: to beat antivaccination campaigners we need to learn from them—an essay by Kathryn Perera, Henry Timms, and Jeremy Heimans', 2 December 2019, https://www.bmj.com/content/367/bmj.l6447/rr-8
Competing interests: AgeofAutism.com, an on-line daily journal, concerns itself with the potential environmental sources for the proliferation of autism, neurological impairment, immune dysfunction and chronic disease. I receive no payment as UK Editor