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From embodied risk to embodying hope: Therapeutic experimentation and experiential information sharing in a contested intervention for Multiple Sclerosis

Abstract

People who pursue unproven therapies are often portrayed as ‘desperate’ individuals duped by medical racketeers peddling ‘false hope’. These patients, in contrast, present themselves as empowered citizens who have taken an informed decision to pursue an experimental therapy. This paper explores the latter perspective through the case of the so-called ‘liberation procedure’: a controversial endovascular intervention proposed as a treatment for Multiple Sclerosis (MS). Drawing on interviews with 48 people affected by MS, we analyse the decision-making processes and justifications thereof of those who had the procedure (n = 31). While the decision to have the intervention might not have been justified according to the standards of evidence-based medicine, it was nonetheless premised on a shared ‘experiential logic’ – conceptualised as a logic of embodied risk/hope – that extends beyond the specific condition and therapy in question. The paper explicates this logic, concentrating on patients’ negotiations of (a) risk and uncertainty; (b) expertise and evidence; and (c) hope and experiment. In particular, we foreground how, through a combination of therapeutic experimentation and experiential information sharing, patients turn their own bodies into (contested) sources of hope for themselves and others, which, in turn, shapes their embodied experiences of living with MS in the present.

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Notes

  1. On the rise of medical travel (or ‘transnational healthcare’ as some, like Botterill et al (2013) and Bell et al (2015), prefer to call it) as well as the widespread attention, it has received from the media, academics, medical practitioners and policy-makers see Turner (2007), Murdoch and Scott (2010), Whittaker et al (2010).

  2. See, for example, the Grady (2010), the BBC (2011), Ubelacker (2012) and Fayerman (2013), for such coverage of patients’ responses to the theory and intervention.

  3. Our use of ‘logic’ is not meant to imply that the patients’ decisions were ‘logical’ or ‘rational’ in the sense that we have judged them to be ‘justified’ or ‘sound’. Rather we use the terms to signify that the practices we analyse have an internal coherence, albeit one that differs from the dominant logics of biomedicine. There are a number of alternative social scientific terms and concepts that we could have drawn on here, such as discourse, mode of ordering, regime or style. Taking inspiration from Annemarie Mol’s use of the term (Mol, 2008, p. 8), we use logic to indicate that the practices we explore have an underlying, if contingent and fragile, rationality that holds them together, linking words, practices and materialities in particular situated ways. In addition, we chose to use logic over other possible alternatives because it chimes with how our interviewees described their decision-making practices and would be recognisable to them.

  4. A number of private medical ‘tourist’ clinics in countries such as Poland, Bulgaria, India and Cost Rica offered the intervention. It was available privately in the US and UK (in some cases as part of research studies, although patients still had to pay). Initially, if the patient could find an interventional radiologist willing to perform the procedure it was available in Australia, but finding someone willing to do so was not easy. As the intervention gained increased media attention and become more controversial, many of the radiologists and clinics that offered it stopped doing so. Costs varied greatly depending on country, radiologist, number of angioplasties and/or stents and could be anywhere between $10,000 and $15,000 per procedure, excluding travel and accommodation.

  5. Zamboni initially proposed the idea that vascular abnormalities might play a role in MS in 2006 (Zamboni, 2006). However, it was with the publication of the research studies in 2009 that his work started to receive widespread international attention from patient groups, the media and MS researchers.

  6. For the FDA’s warning about CCSVI and the liberation procedure see FDA (2012); for NICE’s guidance see NICE (2012); for the systematic review and advice of the CIHR see CIHR (2011).

  7. At the time of writing, the most recent update on CCSVI-related research was a presentation given by Anthony Traboulsee (Associate Professor of Neurology at the University of British Columbia) at the Society for Interventional Radiology’s annual scientific meeting on the 8th of March 2017. Based on an unpublished double-blinded trial of 104 people with MS, the study found no association between venous angioplasty and improvement in MS symptoms 48 weeks post the intervention (Mulholland, 2017). Zamboni’s much awaited BRAVE DREAMS (BRAin VEnous DRainage Exploited Against Multiple Sclerosis) trial has yet to be completed (http://bravedreams.ccsvi-sm.org/). While support for the liberation procedure has dwindled, many people believe the intervention had a positive effect on their health and activists continue to support further research, for example, the CCSVI Alliance (http://ccsvi.org/), the Canadian Neurovascular Health Society (http://www.cnhs.ca/) and CCSVI Australia (http://ccsviaustralia.com.au/).

  8. Natalizumab, a DMD for highly active MS.

  9. An opioid believed to have a positive effect on the immune system.

  10. Compare with Petersen et al (2014, p. 675) and Prasad (2015, p. 141).

  11. The question of what medical specialism and expertise is best suited to researching and treating MS is a long-standing one and has been the cause of divisions in the field in the past. For more on the wider historical context of such debates, see Nicolson and McLaughlin (1988) and Nicolson and Lowis (2002).

  12. We use ‘regime of truth’ here to indicate particular logics and associated forms of evidence, rather than the full Foucauldian sense of the term (Foucault, 1991).

  13. Although MS is not strictly speaking a genetic disease, it has long been believed that there is a genetic component. For more on genetics in MS see Hoppenbrouwers and Hintzen (2011).

  14. Titled “The Liberation Treatment: A whole new approach to MS”; this documentary was aired in November 2009 on CTV news’ current affairs programme W5 (http://www.ctvnews.ca/the-liberation-treatment-a-whole-new-approach-to-ms-1.456617).

  15. Video available at: https://www.youtube.com/watch?v=pjOvd4PBnoo, accessed 12 November 2016.

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Acknowledgements

The authors would like to thank all our interviewees; without your generosity this research would not have been possible. We would also like to thank Kerri Cassidy for giving us permission to cite her YouTube video and for providing feedback on the final draft of the paper. Fadhila Mazanderani would like to thank the NIHR who provided funding for her work as part of the iPEx programme. She would also like to thank members of the iPEx programme for discussions that contributed to the ideas put forward in the paper, especially John Powell. The iPEx programme presents independent research funded by the NIHR under its Programme Grants for Applied Research funding scheme (RP-PG-0608-10147). The views expressed in this article are those of the authors, representing iPEx, and not necessarily those of the NHS, the NIHR or the Department of Health. Jenny Kelly would like to thank the Canadian Institutes of Health Research who provided funding through their Master’s Award: Frederick Banting and Charles Best Canada Graduate Scholarships (#218607). Andy Byford provided invaluable feedback on an early draft of the paper for which the authors are very grateful.

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Mazanderani, F., Kelly, J. & Ducey, A. From embodied risk to embodying hope: Therapeutic experimentation and experiential information sharing in a contested intervention for Multiple Sclerosis. BioSocieties 13, 232–254 (2018). https://doi.org/10.1057/s41292-017-0066-z

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Keywords

  • multiple sclerosis
  • hope
  • risk
  • experiment
  • evidence
  • experience