Background Thalassaemia affects many families in Northeast Syria, an area devastated by over a decade of conflict which has significantly impacted their health system. People with thalassaemia require holistic multidisciplinary care for the clinical complications of thalassaemia. The risks of thalassaemia treatment include blood-borne viral infections secondary to unsafe transfusion, increased vulnerability to serious bacterial infection following splenectomy, and complications of both iron overload and iron chelation therapy. Médecins Sans Frontières (MSF) provided outpatient thalassaemia care programmes in northeast Syria between April 2017 October 2019 in a complex conflict context challenged by population displacement, the destruction of medical facilities, and periods of insecurity. Methods We performed a secondary descriptive analysis of the thalassaemia cohort data to describe basic clinical and demographic characteristics of the patient population. A desk review of internal and publicly available documents was supplemented by informal interviews with MSF staff to describe and analyse the programmatic approach. Case description MSF delivered programmes with thalassaemia investigations, provision of blood transfusion, iron chelation therapy, and psychosocial support. Thalassemia programmes were novel for the organisation and operational learning took place alongside service implementation. Lessons were identified on equipment procurement and the requirements for the implementation of vital investigations (including ferritin testing), to inform clinical decision making. Lessons included the importance of supply planning for sufficient blood products to meet diverse clinical needs in a conflict area, so those with thalassaemia have continued access to blood products among the competing priorities. Iron chelation therapy met a large need in this cohort. Adapted protocols were implemented to balance social factors, hygiene considerations, toxicity, tolerability, and adherence to therapy. Wider service needs included considerations for family planning advice and services, continuity of care and patient access through decentralised services or laboratory access, psychosocial support, and improved data collection including quality of life measurements to understand the full impact of such programmes. Conclusions Although this type of programming was not “routine” for the organisation, MSF demonstrated that life-sustaining thalassaemia care can be provided in complex conflict settings. International non-governmental organisations can consider this care possible in similar contexts.
Background To contribute toward the dialogue on addressing non-communicable and chronic disease in humanitarian emergencies, this article will explore the experiences of Médecins Sans Frontières in attempting to find support for the haemodialysis network in Yemen. With the changing profile of the global disease burden and a broadening concept of emergency health needs to include chronic illness and disability, the aid sector has committed through the World Humanitarian Summit and the Sustainable Development Goals to leave no one behind and thus to meet the health needs of these previously excluded and highly vulnerable people. The civil war in Yemen compromised the medical supply chain supporting the health facilities providing dialysis for patients with end-stage renal disease. The article will critique the aid sector’s slow response to this issue and expose the gap between principles, commitments, and practice related to noncommunicable disease in emergencies. Method Following direct experiences from the authors as leaders in the aid response in Yemen, reviews of grey literature from aid and health actors in Yemen were conducted along with a review of literature and policy documents related to noncommunicable disease in emergency. Key informant interviews and press statements supported analysis and events that took place in the time span of roughly 4 years that frames this period of analysis. Results Examination of the impacted patient population, interviews, literature and documented events indicates that there is discord between policy, commitments stated by aid donors and practice. Conclusion The aid sector must use a more contextualised approach when designing programmes to manage the burden of non-communicable diseases in health contexts where crises occur, particularly for lifesaving forms of therapy. Aid agencies and the global health community must increase pressure on donors and implementing agencies to live up to their commitments to include these patient populations.
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