Multi-actor system dynamics in access to disease-modifying treatments for multiple sclerosis in Southeast Asia: A regional survey and suggestions for improvement.

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.

Addressing knowledge gaps in Parkinson's disease: a report on the Movement Disorder Society's Centre-to-Centre initiative to improve Parkinson's disease services in Lao People's Democratic Republic.

BACKGROUND: Lao People's Democratic Republic (Lao PDR) has only nine neurologists for seven million people; none have formal training in Parkinson's disease (PD). Medical specialists require sufficient PD knowledge to provide high-quality care. METHODS: This study outlines a Centre-to-Centre programme for developing PD expertise in underserved regions through a tailored two-year educational enterprise between an established movement disorder mentor centre at Chulalongkorn University in Thailand and mentee centres in Lao PDR. Background knowledge of 80 Laotian physicians was assessed using a validated PD knowledge questionnaire containing 26 questions divided into 3 sections (diagnosis, therapeutic options, disease course) before and immediately after one-day kick-start training. Responses were compared across physicians' demographic groups. RESULTS: Of 80 respondents, 50 (62.5%) were board-certified physicians, of which 27 (54%) specialised in internal medicine. Apparent knowledge gaps were shown by a 51.2% correct response rate for total score, 52.8% for diagnosis, 50.6% for therapeutic options, and 48.2% for disease course. No significant differences in total score or any domain sub-scores between neurologists and other specialties were found. Many did not know which non-motor symptoms could occur as prodromal symptoms or late in course of PD. Incorrect responses mainly reflected a lack of knowledge of the impact of medication on disease. Total and domain sub-scores significantly improved after the course (p < 0.05, each). The size of difference of the means was significant for the total score (d = 0.82), therapeutic option (d = 0.56), and disease course (d = 0.68) sub-scores. CONCLUSIONS: Significant improvement of PD knowledge amongst Laotian physicians is demonstrated after a training course, focusing on practical management of PD. Our findings highlight the importance of continued medical education, especially PD-specific training.

The First 10 Thrombolysis for Acute Ischemic Stroke in Lao People's Democratic Republic under Teleconsultation from Thailand.

BACKGROUND: Acute ischemic stroke patients in Lao People's Democratic Republic (Lao PDR) are unable to access the intravenous thrombolytic therapy using recombinant tissue plasminogen activator (rtPA) due to various reasons. AIMS: This study aimed to evaluate the feasibility and safety of thrombolytic therapy administration at Mittaphab Hospital, Lao PDR under the international telestroke consultation system from King Chulalongkorn Memorial Hospital, Thailand. METHODS: Acute ischemic stroke patients who presented at Mittaphab Hospital within 4.5 hours after the onset and received thrombolytic therapy between December 2016 and June 2017 were studied. An immediate real time teleconsultation with 24 hours availability between neurologists at Mittaphab hospital and the Chulalongkorn stroke team was performed in all cases for patient evaluation and decision for thrombolytic treatment. RESULTS: There were 205 patients with acute stroke, 28 patients (14%) arrived at the hospital within 4.5 hours after the onset. Ten patients (5%) were eligible for intravenous rtPA. The mean duration from onset to hospital arrival was 122.50 minutes and the mean door to needle time was 108 minutes. The mean National Institute of Health stroke scale (NIHSS) before thrombolysis was 10. At 90 days, the mean NIHSS was 3 and the mean mRS was 2. Seventy percent of patients had good outcome (mRS ≤2). Only one patient developed massive cerebral infarction. None of the patient developed symptomatic intracerebral hemorrhage or major bleedings. CONCLUSIONS: Telestroke consultation from Thailand can facilitate the thrombolytic therapy for acute ischemic stroke patients in Lao PDR.

Second regional plasmapheresis conference and workshop for Southeast Asia (SEA) on the immunomodulatory role of plasma exchange in central and peripheral nervous system disorders, Kuala Lumpur, Malaysia, 9th December 2017.

In December 2017, 79 delegates attended the 2nd regional plasmapheresis conference and workshop for Southeast Asia (SEA) on the immunomodulatory role of plasma exchange in central and peripheral nervous system disorders in Kuala Lumpur, Malaysia. This meeting featured 6 plenary lectures, interactive sessions dedicated for experience sharing, case presentations, and a practical session for paramedics. Clinical experts and researchers from 7 SEA countries and India shared experience and challenges in treating autoimmune neurological disorders. While the spectrum of diseases and neurology practice remained largely similar, there was great disparities in accessibility of therapeutic plasma exchange (TPE) within SEA countries and between urban or rural settings. Costs, human resources, and healthcare policies are common challenges in providing sustainable TPE services. Novel techniques and innovative ideas in performing TPE were explored. A working consortium comprising of key opinion leaders was proposed to improve standards of TPE and enhance future research.