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

References

• Akrich, M., Méadel, C., & Rabeharisoa, V. (2009). Se mobiliser pour la santé: des associations témoignent [Mobilising for health: Associations testify]. Presses des mines.
   Google Scholar
• Allen, L. N., & Feigl, A. B. (2017). What’s in a name? A call to reframe non-communicable diseases. The Lancet Global Health, 5(2), e129–e130. https://doi.org/10.1016/S2214-109X(17)30001-3
   PubMed Web of Science ®Google Scholar
• Amoah, V. M. K., Anokye, R., Acheampong, E., Dadson, H. R., Osei, M., & Nadutey, A. (2018). The experiences of people with diabetes-related lower limb amputation at the Komfo Anokye Teaching Hospital (KATH) in Ghana. BMC Research Notes, 11(1), 66. https://doi.org/10.1186/s13104-018-3176-1
   PubMedGoogle Scholar
• Barbot, J. (2002). Les malades en mouvements: la médecine et la science à l'épreuve du sida [Patients on the move: Medicine and science in the face of AIDS]. Balland.
   Google Scholar
• Bazeley, P. (2013). Qualitative data analysis: Practical strategies. Sage.
   Google Scholar
• Beaglehole, R., & Yach, D. (2003). Globalisation and the prevention and control of non-communicable disease: The neglected chronic diseases of adults. The Lancet, 362(9387), 903–908. https://doi.org/10.1016/S0140-6736(03)14335-8
   PubMed Web of Science ®Google Scholar
• Benford, R. D. (2013). Frame disputes. In D. A. Snow, D. della Porta, B. Klandermans, & D. McAdam (Eds.), The Wiley-Blackwell encyclopedia of social and political movements. Wiley Online Library. https://doi.org/10.1002/9780470674871.wbespm092
   Google Scholar
• Benford, R. D., & Snow, D. A. (2000). Framing processes and social movements: An overview and assessment. Annual Review of Sociology, 26(1), 611–639. https://doi.org/10.1146/annurev.soc.26.1.611
   Web of Science ®Google Scholar
• Beran, D., & Yudkin, J. S. (2010). Looking beyond the issue of access to insulin: What is needed for proper diabetes care in resource poor settings. Diabetes Research and Clinical Practice, 88(3), 217–221. https://doi.org/10.1016/j.diabres.2010.03.029
   PubMed Web of Science ®Google Scholar
• Besançon, S. (2006). En première ligne: l'Association Malienne de Lutte contre le Diabète [On the frontline: The Malian Association for the fight against diabetes]. Diabetes Voice, 51(3), 38–39.
   Google Scholar
• Besançon, S. (2009). Les difficultés de la prise en charge du diabète de type 1 [The challenges of managing type 1 diabetes]. Developpement et Sante, (193).
   Google Scholar
• Besançon, S., Balcou-Debussche, M., Ferdynus, C., Sidibé, A., & Debussche, X. (2016). Therapeutic education structured by peer educators for type 2 diabetic patients in Mali: Promising results. Médecine des Maladies Métaboliques, 10(2), 167–171. https://doi.org/10.1016/S1957-2557(16)30038-4
   Google Scholar
• Besançon, S., Fall, I.-S., Doré, M., Sidibé, A. T., Hagon, O., Chappuis, F., & Beran, D. (2015). Diabetes in an emergency context: The Malian case study. Conflict and Health, 9(1), 15. https://doi.org/10.1186/s13031-015-0042-9
   PubMedGoogle Scholar
• Besançon, S., & Sidibé, A. T. (2012). Civil society facing down the diabetes emergency in Mali. Diabetes Voice, 57(2), 40–42.
   Google Scholar
• Besançon, S., Sidibé, A. T., Beran, D., & Fleury-Perkins, C. (2018). L’expérience de l’ONG Santé Diabète dans la lutte contre le diabète en Afrique [The experience of the NGO Santé Diabète in the fight against diabetes in Africa]. Médecine et santé tropicales, 28(4), 363–367. https://doi.org/10.1684/mst.2018.0835
   PubMed Web of Science ®Google Scholar
• Besson, R., Bernard, M., Tijou Traore, A., & Gobatto, I. (2010). Le diabète, une épidémie mondiale? Construction et qualification d'un fait épidémiologique [Diabetes, a global epidemic? Construction and qualification of an epidemiological fact]. In V. Chasles (Ed.), Santé et mondialisation (pp. 173–191). Presses Universitaires de Lyon.
   Google Scholar
• Best, R. K. (2012). Disease politics and medical research funding. American Sociological Review, 77(5), 780–803. https://doi.org/10.1177/0003122412458509
   Web of Science ®Google Scholar
• Boivin, A. (2009). L’art de la négociation entre son contexte de vie et le diabète de type 2. Stratégies d’autogestion développées par les femmes de l’île de La Réunion [The art of negotiating between one’s life context and type 2 diabetes. Self-management strategies developed by women on Reunion Island]. Université Laval.
   Google Scholar
• Broqua, C. (Ed.). (2018). Se mobiliser contre le sida en Afrique: Sous la santé globales, les luttes associatives [Mobilising against AIDS in Africa: Underneath global health, associative struggles]. L’Harmattan.
   Google Scholar
• Brown, P., Morello-Frosch, R., & Zavestoski, S. (2011). Contested illnesses: Citizens, science, and health social movements. Univ of California Press.
   Google Scholar
• Brown, P., & Zavestoski, S. (2004). Social movements in health: An introduction. Sociology of Health and Illness, 26(6), 679–694. https://doi.org/10.1111/j.0141-9889.2004.00413.x
   PubMed Web of Science ®Google Scholar
• Brown, P., Zavestoski, S., McCormick, S., Mayer, B., Morello-Frosch, R., & Gasior Altman, R. (2004). Embodied health movements: New approaches to social movements in health. Sociology of Health and Illness, 26(1), 50–80. https://doi.org/10.1111/j.1467-9566.2004.00378.x
   PubMed Web of Science ®Google Scholar
• Brown, T. M., & Fee, E. (2014). Social movements in health. Annual Review of Public Health, 35(1), 385–398. https://doi.org/10.1146/annurev-publhealth-031912-114356
   PubMedGoogle Scholar
• Browne, J. L., Ventura, A., Mosely, K., & Speight, J. (2013). ‘I call it the blame and shame disease’: A qualitative study about perceptions of social stigma surrounding type 2 diabetes. BMJ Open, 3(11), e003384. https://doi.org/10.1136/bmjopen-2013-003384
   PubMed Web of Science ®Google Scholar
• Buse, K., Tanaka, S., & Hawkes, S. (2017). Healthy people and healthy profits? Elaborating a conceptual framework for governing the commercial determinants of non-communicable diseases and identifying options for reducing risk exposure. Globalization and Health, 13(1), 34. https://doi.org/10.1186/s12992-017-0255-3
   PubMed Web of Science ®Google Scholar
• Chaufan, C., & Saliba, D. (2019). The global diabetes epidemic and the nonprofit state corporate complex: Equity implications of discourses, research agendas, and policy recommendations of diabetes nonprofit organizations. Social Science & Medicine, 223, 77–88. https://doi.org/10.1016/j.socscimed.2019.01.013
   PubMed Web of Science ®Google Scholar
• Clark, J. (2014). Medicalization of global health 3: The medicalization of the non-communicable diseases agenda. Global Health Action, 7(1), 24002. https://doi.org/10.3402/gha.v7.24002
   PubMed Web of Science ®Google Scholar
• Crossley, N. (2002). Making sense of social movements. Open University Press.
   Google Scholar
• de-Graft Aikins, A. (2002). Exploring biomedical and ethnomedical representations of diabetes in Ghana and the scope for cross-professional collaboration: A social psychological approach to health policy. Social Science Information, 41(4), 625–652. https://doi.org/10.1177/0539018402041004007
   Web of Science ®Google Scholar
• de-Graft Aikins, A. (2003). Living with diabetes in rural and urban Ghana: A critical social psychological examination of illness action and scope for intervention. Journal of Health Psychology, 8(5), 557–572. https://doi.org/10.1177/13591053030085007
   PubMed Web of Science ®Google Scholar
• de-Graft Aikins, A., Anum, A., Agyemang, C., Addo, J., & Ogedegbe, O. (2012). Lay representations of chronic diseases in Ghana: Implications for primary prevention. Ghana Medical Journal, 46(2 Suppl), 59–68.
   PubMedGoogle Scholar
• de-Graft Aikins, A., Awuah, R. B., Pera, T. A., Mendez, M., & Ogedegbe, G. (2015). Explanatory models of diabetes in urban poor communities in Accra, Ghana. Ethnicity & Health, 20(4), 391–408. https://doi.org/10.1080/13557858.2014.921896
   PubMed Web of Science ®Google Scholar
• de-Graft Aikins, A., Boynton, P., & Atanga, L. L. (2010). Developing effective chronic disease interventions in Africa: Insights from Ghana and Cameroon. Globalization and Health, 6(1), 6. https://doi.org/10.1186/1744-8603-6-6
   PubMedGoogle Scholar
• della Porta, D., & Tarrow, S. (2005). Transnational protest and global activism. Rowman & Littlefield.
   Google Scholar
• Derbez, B., & Rollin, Z. (2016). Sociologie du cancer [Sociology of cancer]. La Découverte.
   Google Scholar
• Diani, M., & McAdam, D. (Eds.). (2003). Social movements and networks. Oxford University Press.
   Google Scholar
• Dimé, M. (2013). Diabetes of rich, diabetes of poor. Diabetes as an evidence for health inequalities in Senegal. Comptes Rendues Biologies, 336(5-6), 249–252. https://doi.org/10.1016/j.crvi.2013.04.005
   PubMed Web of Science ®Google Scholar
• Eboko, F., Bourdier, F., & Broqua, C. (2011). Les Suds face au sida: quand la société civile se mobilise [The south facing AIDS: When civil society mobilises]. IRD.
   Google Scholar
• Epstein, S. (1996). Impure science: AIDS, activism and the politics of knowledge. University of California Press.
   Google Scholar
• Ferguson, L., Tarantola, D., Hoffmann, M., & Gruskin, S. (2016). Non-communicable diseases and human rights: Global synergies, gaps and opportunities. Global Public Health, 12(10), 1200–1227. https://doi.org/10.1080/17441692.2016.1158847
   PubMed Web of Science ®Google Scholar
• Fillieule, O., Agrikoliansky, É, & Sommier, I. (Eds.). (2010). Penser les mouvements sociaux [Thinking about social movements]. La Découverte.
   Google Scholar
• Fisch, A., Pichard, E., Prazuck, T., Leblanc, H., Sidibe, Y., & Brucker, G. (1987). Prevalence and risk factors of diabetes mellitus in the rural region of Mali (West Africa): A practical approach. Diabetologia, 30(11), 859–862. https://doi.org/10.1007/BF00274794
   PubMed Web of Science ®Google Scholar
• Gobatto, I., & Tijou Traoré, A. (2011). Apprendre à savoir y faire avec le diabète au Mali. La fabrique locale des rôles professionnels et profanes [Learning to cope with diabetes in Mali. The local manufacture of professional and lay roles]. Revue d'anthropologie des connaissances, 5(3), 509–532. https://doi.org/10.3917/rac.014.0509
   Google Scholar
• Gobatto, I., Tijou Traore, A., & Martini, J. (2016). Rôle du patient et maladie chronique au Mali: entre politiques et pratiques expertes et profanes [The role of the patient and chronic disease in Mali: Between policies and expert and lay practices]. Santé Publique, 28(1), 103–111. https://doi.org/10.3917/spub.161.0103
   PubMedGoogle Scholar
• Goffman, E. (1986). Frame analysis: An essay on the organization of experience. Northeastern University Press.
   Google Scholar
• Grossman, E., & Saurugger, S. (2006). Les groupes d'intérêt au secours de la démocratie? [Interest groups to the rescue of democracy?]. Revue française de science politique, 56(2), 299–321. https://doi.org/10.3917/rfsp.562.0299
   Google Scholar
• Hassenteufel, P. (1991). Pratiques représentatives et construction identitaire. Une approche des coordinations [Representational practices and identity constructoin: A study of ‘coordinations’]. Revue française de science politique, 41(1), 5–27. https://doi.org/10.3406/rfsp.1991.394537
   Google Scholar
• Heller, O., Somerville, C., Suggs, L. S., Lachat, S., Piper, J., Aya Pastrana, N., Correia, J. C., Miranda, J. J., & Beran, D. (2019). The process of prioritization of non-communicable diseases in the global health policy arena. Health Policy and Planning, 34(5), 370–383. https://doi.org/10.1093/heapol/czz043
   PubMed Web of Science ®Google Scholar
• Hennink, M. M., Kaiser, B. N., Sekar, S., Griswold, E. P., & Ali, M. K. (2017). How are qualitative methods used in diabetes research? A 30-year systematic review. Global Public Health, 12(2), 200–219. https://doi.org/10.1080/17441692.2015.1120337
   PubMed Web of Science ®Google Scholar
• IDF. (2019). IDF diabetes atlas (9th ed.). International Diabetes Federation.
   Google Scholar
• IDF. (2021). IDF Africa members. International Diabetes Federation. https://idf.org/our-network/regions-members/africa/members.html
   Google Scholar
• Imperato, P. J., Handelsman, M. B., Fofana, B., & Sow, O. (1976). The prevalence of diabetes mellitus in three population groups in the Republic of Mali. Transactions of the Royal Society of Tropical Medicine and Hygiene, 70(2), 155–158. https://doi.org/10.1016/0035-9203(76)90179-6
   PubMed Web of Science ®Google Scholar
• Keeling, A. (2011). The UN summit and beyond: A new era for diabetes. Diabetes Research and Clinical Practice, 94(1), 163–165. https://doi.org/10.1016/j.diabres.2011.09.014
   PubMed Web of Science ®Google Scholar
• Landzelius, K. (2006). Introduction: Patient organization movements and new metamorphoses in patienthood. Social Science and Medicine, 62(3), 529–537. https://doi.org/10.1016/j.socscimed.2005.06.023
   PubMed Web of Science ®Google Scholar
• Manderson, L., & Smith-Morris, C. (Eds.). (2010). Chronic conditions, fluid states. Chronicity and the anthropology of illness. Rutgers University Press.
   Google Scholar
• Martini, J., & Fligg, A. (2011). L'émergence du diabète de type 2 en tant que problème de santé publique au Mali [The emergence of type 2 diabetes as a public health problem in Mali]. In D. Kerouedan (Ed.), Santé internationale. Les enjeux de santé au Sud (pp. 105–119). Presses de Sciences Po.
   Google Scholar
• Martini, J., Tijou Traoré, A., & Mahieu, C. (2019a). Chronic patient as intermittent partner for policy-makers: The case of patient participation in the fight against diabetes and HIV/AIDS in Mali. BMC Public Health, 19(1), 1179. https://doi.org/10.1186/s12889-019-7453-2
   PubMed Web of Science ®Google Scholar
• Martini, J., Tijou Traoré, A., & Mahieu, C. (2019b). La mise à l'agenda du diabète au Mali: décalage et interdépendance entre acteurs locaux, nationaux et internationaux [Putting diabetes on the agenda in Mali: Discrepancies and interdependence between local, national and international actors]. Politique africaine, 156(4), 61–82. https://doi.org/10.3917/polaf.156.0061
   Google Scholar
• Mathieu, L. (2012). L'espace des mouvements sociaux [The space of social movements]. Éditions du Croquant.
   Google Scholar
• McCarthy, J. D., & Zald, M. N. (1977). Resource mobilization and social movements: A partial theory. American Journal of Sociology, 82(6), 1212–1241. https://doi.org/10.1086/226464
   Web of Science ®Google Scholar
• MHPH. (2014). National strategic plan to fight non-communicable diseases 2015–2019. Ministry of Health and Public Hygiene.
   Google Scholar
• MHPH, MSHAR, & MWCF. (2014). Health and social development program 2014–2018 (PRODESS III). Ministry of Health and Public Hygiene, Ministry of Solidarity Humanitarian Action and Reconciliation, Ministry of Women Children and Families.
   Google Scholar
• Mshunqane, N., Stewart, A. V., & Rothberg, A. D. (2012). Type 2 diabetes management: Patient knowledge and health care team perceptions, South Africa. African Journal of Primary Health Care and Family Medicine, 4(1), 1–7. https://doi.org/10.4102/phcfm.v4i1.392
   Google Scholar
• Mwangome, M., Geubbels, E., Klatser, P., & Dieleman, M. (2017). Perceptions on diabetes care provision among health providers in rural Tanzania: A qualitative study. Health Policy and Planning, 32(3), 418–429. https://doi.org/10.1093/heapol/czw143
   PubMed Web of Science ®Google Scholar
• Pichard, E., Berthe, G., Traore, H. A., & Dembele, M. (1988). Les acidocétoses diabétiques au Mali. A propos de vingt cas [Diabetic ketoacidosis in Mali. About twenty cases]. Annales de la Société Belge de Médecine Tropicale, 68(1), 67–72.
   PubMedGoogle Scholar
• Raghavan, N. (1992). Les ONG au Mali. Politique africaine, (47), 91–100.
   Google Scholar
• Raymon, G. (2013). Le diabète: une grande cause nationale [Diabetes: A major national cause]. In Collectif (Ed.), Le diabète. Epidémie silencieuse (pp. 223–231). Le bord de l'eau.
   Google Scholar
• Roth, G. A., Abate, D., Abate, K. H., Abay, S. M., Abbafati, C., Abbasi, N., Abbastabar, H., Abd-Allah, F., Abdela, J., Abdelalim, A., Abdollahpour, I., Abdulkader, R. S., Abebe, H. T., Abebe, M., Abebe, Z., Abejie, A. N., Abera, S. F., Abil, O. Z., Abraha, H. N., … Murray, C. J. L. (2018). Global, regional, and national age-sex-specific mortality for 282 causes of death in 195 countries and territories, 1980–2017: A systematic analysis for the global burden of disease study 2017. The Lancet, 392(10159), 1736–1788. https://doi.org/10.1016/S0140-6736(18)32203-7
   PubMed Web of Science ®Google Scholar
• Roy, A. (2005). La société civile dans le débat politique au Mali [Civil society in the political debate in Mali]. Cahiers d'études africaines, 2(178), 573–584. https://doi.org/10.4000/etudesafricaines.5477
   Google Scholar
• Roy, A. (2010). Mali: Instrumentalisation de la société civile. Alternatives Sud, 17, 111–118.
   Google Scholar
• Rutebemberwa, E., Katureebe, S. K., Gitta, S. N., Mwaka, A. D., & Atuyambe, L. (2013). Perceptions of diabetes in rural areas of Eastern Uganda. Curationis, 36(1), 1–7. https://doi.org/10.4102/curationis.v36i1.121
   PubMedGoogle Scholar
• Saunders, B., Sim, J., Kingstone, T., Baker, S., Waterfield, J., Bartlam, B., Burroughs, H., & Jinks, C. (2018). Saturation in qualitative research: Exploring its conceptualization and operationalization. Quality & Quantity, 52(4), 1893–1907. https://doi.org/10.1007/s11135-017-0574-8
   PubMed Web of Science ®Google Scholar
• Sidibé, A. T., Besançon, S., & Beran, D. (2007). Le diabète: un nouvel enjeu de santé publique pour les pays en voie de développement: l’exemple du Mali [Diabetes: A new public health challenge for developing countries: The example of Mali]. Médecine des Maladies Métaboliques, 1(1), 93–98. https://doi.org/10.1016/S1957-2557(07)88672-X
   Google Scholar
• Sidibé, A. T., Traoré, A., Touré, A., Dembélé, A., Traoré, A., Cissé, I., & Diallo, D. (2000). Suivi ambulatoire du diabétique au Mali [Outpatient follow-up of diabetics in Mali]. Mali Médical, 15(3), 41–43.
   Google Scholar
• Siméant, J. (2014). Contester au Mali. Formes de la mobilisation et de la critique à Bamako [Protesting in Mali. Forms of mobilisation and criticism in Bamako]. Karthala.
   Google Scholar
• Siméant, J., & Taponier, S. (2014). Interpreting the rise of international “advocacy”. Humanity: An International Journal of Human Rights, Humanitarianism, and Development, 5(3), 323–343. https://doi.org/10.1353/hum.2014.0024
   Google Scholar
• Snow, D. A., & Benford, R. D. (1988). Ideology, frame resonance, and participant mobilization. In B. Klandermans, H. Kriesi, & S. G. Tarrow (Eds.), From structure to action: Comparing social movement research across culture (pp. 197–217). JAI Press.
   Google Scholar
• Stuckler, D., & Siegel, K. (Eds.). (2011). Sick societies: Responding to the global challenge of chronic disease. Oxford University Press.
   Google Scholar
• Tarrow, S. (1993). Cycles of collective action: Between moments of madness and the repertoire of contention. Social Science History, 17(2), 281–307. https://doi.org/10.1017/S0145553200016850
   Web of Science ®Google Scholar
• Thiriot, C. (2002). Rôle de la société civile dans la transition et la consolidation démocratique en Afrique: éléments de réflexion à partir du cas du Mali [The role of civil society in democratic transition and consolidation in Africa: Some reflections from the case of Mali]. Revue internationale de politique comparée, 9(2), 277–295. https://doi.org/10.3917/ripc.092.0277
   Google Scholar
• Tijou Traoré, A. (2010). L'expérience dans la production de savoirs profanes sur le diabète chez des patients diabétiques à Bamako (Mali) [Experience in the production of lay knowledge about diabetes among diabetic patients in Bamako (Mali)]. Sciences sociales et santé, 28(4), 41–76. https://doi.org/10.3917/sss.284.0041
   Google Scholar
• Tijou Traoré, A. (2017). Souffrance morale, situation de vie et gestion de la maladie chronique chez des patients séropositfs et diabétiques à Bamako (Mali) [Moral suffering, life situation and management of chronic disease in seropositive and diabetic patients in Bamako (Mali)]. In F. Bourdier & C. Grenier-Torres (Eds.), L'interdisciplinarité. Un enjeu pour le développement (pp. 159–181). Karthala.
   Google Scholar
• Tilly, C. (1978). From mobilization to revolution. Addison-Wesley.
   Google Scholar
• Tilly, C. (2004). Social movements 1768–2004. Paradigm.
   Google Scholar
• Tilly, C., & Tarrow, S. (2006). Contentious politics (2nd ed.). Paradigm.
   Google Scholar
• UNDP. (2020). Human development report 2020. The next frontier: Human development and the anthropocene.
   Google Scholar
• Vos, T., Lim, S. S., Abbafati, C., Abbas, K. M., Abbasi, M., Abbasifard, M., Abbasi-Kangevari, M., Abbastabar, H., Abd-Allah, F., Abdelalim, A., Abdollahi, M., Abdollahpour, I., Abolhassani, H., Aboyans, V., Abrams, E. M., Abreu, L. G., Abrigo, M. R. M., Abu-Raddad, L. J., Abushouk, A. I., … Murray, C. J. L. (2020). Global burden of 369 diseases and injuries in 204 countries and territories, 1990–2019: A systematic analysis for the global burden of disease study 2019. The Lancet, 396(10258), 1204–1222. https://doi.org/10.1016/S0140-6736(20)30925-9
   PubMed Web of Science ®Google Scholar
• WHO. (2013). Global action plan for the prevention and control of non-communicable diseases 2013–2020.
   Google Scholar
• WHO. (2016). Global report on diabetes.
   Google Scholar
• WHO. (2018). Final report. WHO GCM/NCD working group on the inclusion of NCDs in other programmatic areas (working group 3.1, 2016–2017).
   Google Scholar
• WHO. (2019). Global dialogue on partnerships for sustainable financing of NCD prevention control. meeting report, Copenhagen, Denmark, 9–11 April 2018.
   Google Scholar
• Wing, S. D. (2002). Questioning the state: Constitutionalism and the Malian espace d'interpellation democratique. Democratization, 9(2), 121–147. https://doi.org/10.1080/714000247
   Google Scholar
• Wing, S. D. (2013). Démocratie malienne et dialogue constitutionnel (1991–2007): la quête d'un état de droit [Malian democracy and constitutional dialogue (1991–2007): The quest for the rule of law]. Karthala.
   Google Scholar
• Yang, J. S., Mamudu, H. M., & John, R. (2018). Incorporating a structural approach to reducing the burden of non-communicable diseases. Globalization and Health, 14(1), 66. https://doi.org/10.1186/s12992-018-0380-7
   PubMedGoogle Scholar