RESUMO
Humanitarian health actors are beginning to better consider and manage non-communicable diseases, such as diabetes, in emergency and protracted crisis settings. However, a focus on the more globally prevalent type 2 diabetes (T2D) dominates. Blind spots prevail in the unmet needs for type 1 diabetes (T1D), a chronic autoimmune condition where individuals are unable to produce insulin, thereby dependent on lifelong insulin therapy and blood glucose management. Although some T1D management requirements overlap with those of T2D, the immediate risk of fatal complications following insulin therapy disruption, the earlier age of onset during childhood, adolescence or young adulthood, and its lower prevalence compared to T2D within communities and local health systems mean that T1D requires nuanced consideration and targeted interventions. Intending to inform program and policy design for people with T1D (PWT1D), we synthesized themes of lived experience from PLWT1D and their caregivers, and the tacit working knowledge of health providers and policymakers in the context of local humanitarian operations. Through a strategic search of health databases (up to July 2023), we identified 11 articles that include interview excerpts from PWT1D, caregivers, healthcare providers and policymakers about T1D management in humanitarian settings. We used reflexive thematic analysis to guide data extraction, coding, and synthesis, resulting in the identification of four overarching themes: food and insulin security, family relations, knowledge translation, and response to diagnosis. The narratives highlight harsh trade-offs made by PWT1D and their families in the face of insulin and food insecurity, as well as the damaging impact of low T1D education in families, communities and health systems. Targeted family and community-based solutions are urgently required, alongside systemic reforms and international collaboration to enable better T1D coping and management in humanitarian settings.
RESUMO
In this commentary, we advocate for the wider implementation of integrated care models for NCDs within humanitarian preparedness, response, and resilience efforts. Since experience and evidence on integrated NCD care in humanitarian settings is limited, we discuss potential benefits, key lessons learned from other settings, and lessons from the integration of other conditions that may be useful for stakeholders considering an integrated model of NCD care. We also introduce our ongoing project in North Lebanon as a case example currently undergoing parallel tracks of program implementation and process evaluation that aims to strengthen the evidence base on implementing an integrated NCD care model in a crisis setting.
RESUMO
In line with the peer reviewers comments, the authors have added highlights in stead of an abstract. It was felt that it was better able to capture the findings and is more in line with the paper's target audience.
RESUMO
BACKGROUND: Despite the global availability of multiple sclerosis (MS) treatments, accessing and financing them in Southeast Asia (SEA) remains a challenge. This descriptive survey-based study aimed to describe the current state of MS treatment access and local access dynamics within this region. METHODS: The survey questionnaire, comprising of 15 closed-ended and five open-ended questions, was developed by three neurologists with expertise in MS and routine MS patient management, or had training in neuroimmunology. Questionnaire development was guided by the recent Atlas of MS and in alignment with the Access to Treatment framework, focusing on MS diagnosis and treatment issues in SEA. Fifteen neurologists experienced in managing MS across the region were identified as key informants for this study. RESULTS: All fifteen neurologists participated in the survey via email and videoconferencing between January 2020 and February 2023, which included the following countries: Brunei, Cambodia, Indonesia, Malaysia, Myanmar, Lao PDR, Philippines, Singapore, Thailand, Timor-Leste, and Vietnam. All had at least five years of experience in managing MS patients and six had previously completed a neuroimmunology fellowship programme. SEA countries showed disparities in healthcare financing, availability of neurologists, MS treatments, and investigative tools. Access to MS disease-modifying treatments (DMTs) is hindered by high cost, lack of MS specialists, and weak advocacy efforts. On-label DMTs are not listed as essential medicines regionally except for interferon beta1a and teriflunomide in Malaysia. On-label monoclonals are available only in Malaysia, Singapore, and Thailand. Generic on-label DMTs are unavailable due to lack of distributorship and expertise in using them. Off-label DMTs (azathioprine, methotrexate, and rituximab) predominate in most SEA countries. Other challenges include limited access to investigations, education, and knowledge about DMTs among general neurologists, and absence of registries and MS societies. Patient champions, communities, and MS organisations have limited influence on local governments and pharmaceutical companies. Despite its increasing prevalence, there is a lack of concerted priority setting due to MS being perceived as a rare, non-communicable disease. CONCLUSION: This study highlights the distinct dynamics, challenges, and research gaps within this region, and provides suggestions to improve MS diagnosis, education, and medicine access.