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. 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. 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. This study highlights the distinct dynamics, challenges, and research gaps within this region, and provides suggestions to improve MS diagnosis, education, and medicine access.

中文翻译：

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东南亚多发性硬化症疾病缓解治疗的多参与者系统动力学：区域调查和改进建议

尽管多发性硬化症 (MS) 治疗方法在全球范围内可用，但在东南亚 (SEA) 获得这些治疗方法并为其提供资金仍然是一个挑战。这项基于调查的描述性研究旨在描述该地区多发性硬化症治疗的现状和当地的动态。该调查问卷由 15 个封闭式问题和 5 个开放式问题组成，由三位具有多发性硬化症和常规多发性硬化症患者管理专业知识或接受过神经免疫学培训的神经科医生制定。调查问卷的制定以最近的多发性硬化症图集为指导，并与获得治疗框架保持一致，重点关注 SEA 中的多发性硬化症诊断和治疗问题。该地区 15 名在治疗多发性硬化症方面经验丰富的神经科医生被确定为这项研究的关键信息提供者。所有 15 名神经科医生在 2020 年 1 月至 2023 年 2 月期间通过电子邮件和视频会议参与了这项调查，其中包括以下国家：文莱、柬埔寨、印度尼西亚、马来西亚、缅甸、老挝人民民主共和国、菲律宾、新加坡、泰国、东帝汶和越南。所有人都拥有至少五年管理多发性硬化症患者的经验，其中六人之前完成了神经免疫学研究金计划。东南亚国家在医疗保健融资、神经科医生的可用性、多发性硬化症治疗和研究工具方面存在差异。由于成本高、缺乏多发性硬化症专家以及宣传力度薄弱，多发性硬化症疾病缓解治疗 (DMT) 的获得受到阻碍。除马来西亚的干扰素 β1a 和特立氟胺外，标签上的 DMT 并未被列为地区基本药物。标签上的单克隆抗体仅在马来西亚、新加坡和泰国销售。由于缺乏分销权和使用专业知识，通用标签 DMT 无法获得。标签外 DMT（硫唑嘌呤、甲氨蝶呤和利妥昔单抗）在大多数东南亚国家占主导地位。其他挑战包括普通神经科医生获得有关 DMT 的调查、教育和知识的机会有限，以及缺乏登记处和 MS 协会。患者捍卫者、社区和多发性硬化症组织对地方政府和制药公司的影响有限。尽管多发性硬化症的患病率不断上升，但由于多发性硬化症被视为一种罕见的非传染性疾病，因此缺乏协调一致的优先事项设定。这项研究强调了该地区的独特动态、挑战和研究差距，并提供了改善多发性硬化症诊断、教育和药物获取的建议。