Forces of necessity: The role of lay knowledge and advocacy in the re-medicalization of cannabis, 1973-2004

Editor’s Note: Today’s post comes from Dr. Suzanne Taylor, Research Fellow at the Centre for History in Public Health, London School of Hygiene & Tropical Medicine, and is based off of her presentation at the Cannabis: Global Histories conference, held at the University of Strathclyde, Glasgow, on April 19-20, 2018. In it, she explores the role of lay knowledge and social activism in transforming cannabis into a legitimate medical substance from the 1970s to today. 

The problem:

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Alfie Dingley, the face of medical cannabis in the UK

In March 2018, the case of Alfie Dingley, a six year old boy with epilepsy, hit the headlines as his mother campaigned for access to cannabis oil to help alleviate his seizures. [1] But what was the background to activism for access to cannabis on medical grounds? When cannabis-based medicine was withdrawn in the UK in 1973 it appeared that cannabis’s career as a medicine had ended, but, even as cannabis became regulated solely as an illicit drug, it was being re-medicalized.  Within ten years of cannabis tinctures’ removal, synthetic cannabis-based drugs entered the clinic. However, these drugs caused serious side effects, were expensive and difficult to access, and so were little used. In the UK in the late 1990s the development of a cannabis-based drug using extracts from cannabis appeared to offer a potential way forward, and in 2006 the Home Office licensed GW Pharmaceuticals’ drug, Sativex, on a named-patient basis but it has not been widely available.  In 2015 the report Regulating Cannabis for Medical Use in the UK claimed that British patients were “suffering unnecessarily” and argued for the rescheduling of cannabis to enable its prescription and facilitate research.[2]

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Dr. Suzanne Taylor presents her work at the Cannabis: Global Histories conference, April 20, 2018, at the University of Strathclyde, Glasgow. Photo by Morgan Scott, Breathe Images

The incentive to study cannabis as a medicine would not have taken place as it did without the role of lay knowledge. Health activism, in the post-war period, became increasingly important in the health arena and it became an integral aspect of cannabis campaigns.   

Cannabis’s position as a botanical substance was important, as it meant that the general public had access to, and intellectual knowledge of, cannabis’s medical utility.  Despite increased drug controls there remained widespread access to cannabis and a battle over the “ownership” of cannabis emerged. Lay knowledge of cannabis drew attention to its medical properties for a raft of conditions including: glaucoma; multiple sclerosis (MS); pain, and especially in the management of cancer and HIV/AIDS.

But, from the 1990s on, MS patients appeared especially vocal in the UK. Why MS? What did patients want? How did the approaches of the patient groups differ?  What impact did their advocacy have on the UK’s cannabis policy environment and in the re-medicalization of cannabis?

What was my approach? 

This paper, based on historical methodology, traces the role of health activism in the United Kingdom and abroad from campaigns in the 1960s for drug liberalisation (of which therapeutic cannabis was merely one aspect), to the development in the 1970s onwards of specific campaigns for cannabis therapeutics. For example, in the US, the development of the concept of “medical necessity” emerged in relation to glaucoma, and HIV/AIDS. In my paper for Cannabis: Global Histories, I presented a case study of MS patient associations in the UK which campaigned for research on, and access to, cannabis in the 1990s, and I analysed the impact of MS advocacy on the scientific, clinical, industrial, and policy spheres.

How did I go about this study?

This paper was drawn from a chapter in my doctoral dissertation, Medicalizing cannabis: Science, medicine and policy 1973-2004.[3]  It was based on in-depth oral interviews, archival research (including personal papers and institutional archives), and documentary analysis.

What did I find?

That a process of re-medicalization has taken place and is still continuing and within this process lay knowledge and user activism proved crucial.  How? The MS groups did this by:

    • Raising awareness of the issue within policy circles
    • Creating networks for patients and medical cannabis users
    • Providing an invaluable interface between lay and professional spheres, including links between patients and laboratory scientists and clinicians and professional organisations
    • Speaking to the media and keeping the issue on the news agenda
    • Focusing the direction of research, including the form of cannabis to be studied, and making research into extracts of cannabis imperative
    • Contributing to the facilitation of clinical trials and raising the patient perspective within the assessment of trials
    • Encouraging and incentivizing the involvement of the pharmaceutical industry

But I also highlight some of problems of health activism. In the case of cannabis, how much has changed from the patient perspective is limited. Sativex, although licenced in the UK, has not yet been approved by the National Institute of Health and Care Excellence and so it is not available on the NHS except in Wales, where it remains difficult to obtain.  Though some countries have legalized access to cannabis for medical purposes, in the UK it remains a Class B drug. The production and access to a licit cannabis-based drug has often appeared to be almost within patient reach but never quite there. Nonetheless, it was the activism of these groups that opened the door to the re-medicalization of cannabis and the issues raised here and many others still need to be resolved.

FOOTNOTES:

1.) http://www.bbc.co.uk/news/health-43459220 last accessed 29 April 2018.

2.) Curran, V, and F Warburton. 2015. “Regulating Cannabis for Medical Use in the UK.” 2015. http://clear-uk.org/static/media/Reports/appg_regulation_of_medical_cannabis_15.06.15.pdf.

3.) Taylor, S., Medicalizing Cannabis: Science, Medicine and Policy 1973 to the early 21st century (LSHTM, University of London, London, 2010).

 

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