What has been preventing the emergence of a broad social movement on diabetes (and NCDs)? Insights from the mobilisation of diabetes patients' associations in Bamako, Mali

ABSTRACT

Non-communicable diseases (NCDs) are among the leading causes of morbidity and mortality globally. While international strategies for their prevention and control call for greater civil society participation, many observers regret the lack of a broad social movement to address these diseases. This study focuses on diabetes patients’ associations engaged from 1991 to 2014 in Bamako, Mali, and explores what factors influenced their capacity to build a collective national movement to address this disease and shape policy reforms in this area. Our findings show that the emergence of such a movement was limited by several constraints. The focus of diabetes patients’ associations on technical biomedical issues silenced the daily embodied experience of patients and reduced the use of human-rights approaches. Moreover, few financial, material and social resources coupled with a fragmented base limited the scope and strength of claims made by patients’ associations to obtain treatment at reduced coasts. Finally, modes of actions performed failed to challenge more structural inequalities and imbalances of power. Exacerbated by limited political opportunities, these constraints weakened the associations’ ability to drive policy change on diabetes. They reflect some of the current weaknesses of the global mobilisation to address diabetes and NCDs.

KEYWORDS:

• Diabetes
• non communicable diseases (NCDs)
• patients’ associations
• health social movements
• Mali

Acknowledgements

We are indebted to all those who contributed to the development of the research and to the completion of this article. We are particularly grateful to the Malian partners without whom the project could not have been carried out, and would like to acknowledge all the people in Bamako who accepted to be interviewed. We would like to thank David Beran, University of Geneva, for his insightful comments on an earlier version of this article. We are finally grateful to Prof. Bruno Dujardin⁺, who supervised the PhD work of the corresponding author until March 2015 and who was a staunch advocate of people-centred approaches.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Ethics declarations

This paper derives from two broader research programmes. The first programme held from 2007 to 2009 was registered at the Mali National Centre of Scientific and Technological Research (Centre National de la Recherche Scientifique et Technologique – CNRST) in Bamako with the number 007/CNRST/07. It did not require any ethics approval according to the CNRST. The second programme was held from 2010 to 2012 and was registered at the CNRST with the number 036/2010/MESRS/CNRST. It was approved on March 30, 2010 by the Ethics Committee of the National institute for public health research (Institut National de Recherche en Santé Publique – INRSP) of Mali, whose chairperson was Dr. Boulkassoum Haïdara. In both cases, the ethics principles were followed throughout data collection and analysis. Informed consent to participate was always asked to our interviewees. Prior to beginning the interview, the scope of our research and its scientific outputs were clearly stated; we also assured all ethical safeguards, and notably the anonymity of the research findings. As approved by the ethics committee, consent was written for patients and it was verbal for health professionals and representatives of public authorities, donors and civil society organisations. Data was anonymised during the analysis and presentation of our findings.

Data availability statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.

Notes

1 Translated from French by authors.

Additional information

Funding

This paper derives from two broader research programmes. The first programme was titled ‘From one knowledge to another. Knowledge of caregivers, patients and their families about diabetes in Bamako, Mali’. It was supported by the French National research agency (Agence Nationale de la Recherche – ANR) [grant number ANR-06-APPR-008-01] from 2007 to 2009. The second programme was titled ‘Expert and lay knowledge and know-how about patient’s role in caring for chronic disease. The examples of HIV/AIDS and diabetes in Mali’. It was supported by the association Ensemble Contre le Sida/Sidaction [grant number B120-3-01651] from 2010 to 2012. The corresponding author received support from the Alice and David Van Buuren Fund and from the Jaumotte-Demoulin foundation to complete her study, which was part of her PhD work. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.