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. Me...
Saved in:
| Main Authors: | , , , , , , , , , , , , , , , , , , , , |
|---|---|
| Format: | Article |
| Published: |
Elsevier
2024
|
| Subjects: | |
| Online Access: | http://eprints.um.edu.my/45280/ https://doi.org/10.1016/j.msard.2024.105555 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| id |
my.um.eprints.45280 |
|---|---|
| record_format |
eprints |
| spelling |
my.um.eprints.452802024-09-30T08:03:29Z http://eprints.um.edu.my/45280/ Multi-actor system dynamics in access to disease-modifying treatments for multiple sclerosis in Southeast Asia: A regional survey and suggestions for improvement Viswanathan, Shanthi Vijayasingham, Lavanya Laurson-Doube, Joanna Quek, Amy M.L. Tan, Kevin Yeo, Tianrong Seinn, Mya Mya Aye Ohnmar, Ohnmar Estiasari, Riwanti Yassin, Norazieda Hiew, Fu Liong Pasco, Paul M. Hoang, Nghia T.T. Keosodsay, Saysavath Siritho, Sasitorn Apiwattanakul, Metha Ros, Sina de Deus, Brigido Simao Dias Remli, Rabani Abdullah, Suhailah Lim, Su-Yin R Medicine 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. Offlabel 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. Elsevier 2024-05 Article PeerReviewed Viswanathan, Shanthi and Vijayasingham, Lavanya and Laurson-Doube, Joanna and Quek, Amy M.L. and Tan, Kevin and Yeo, Tianrong and Seinn, Mya Mya Aye and Ohnmar, Ohnmar and Estiasari, Riwanti and Yassin, Norazieda and Hiew, Fu Liong and Pasco, Paul M. and Hoang, Nghia T.T. and Keosodsay, Saysavath and Siritho, Sasitorn and Apiwattanakul, Metha and Ros, Sina and de Deus, Brigido Simao Dias and Remli, Rabani and Abdullah, Suhailah and Lim, Su-Yin (2024) Multi-actor system dynamics in access to disease-modifying treatments for multiple sclerosis in Southeast Asia: A regional survey and suggestions for improvement. Multiple Sclerosis and Related Disorders, 85. p. 105555. ISSN 2211-0348, DOI https://doi.org/10.1016/j.msard.2024.105555 <https://doi.org/10.1016/j.msard.2024.105555>. https://doi.org/10.1016/j.msard.2024.105555 10.1016/j.msard.2024.105555 |
| institution |
Universiti Malaya |
| building |
UM Library |
| collection |
Institutional Repository |
| continent |
Asia |
| country |
Malaysia |
| content_provider |
Universiti Malaya |
| content_source |
UM Research Repository |
| url_provider |
http://eprints.um.edu.my/ |
| topic |
R Medicine |
| spellingShingle |
R Medicine Viswanathan, Shanthi Vijayasingham, Lavanya Laurson-Doube, Joanna Quek, Amy M.L. Tan, Kevin Yeo, Tianrong Seinn, Mya Mya Aye Ohnmar, Ohnmar Estiasari, Riwanti Yassin, Norazieda Hiew, Fu Liong Pasco, Paul M. Hoang, Nghia T.T. Keosodsay, Saysavath Siritho, Sasitorn Apiwattanakul, Metha Ros, Sina de Deus, Brigido Simao Dias Remli, Rabani Abdullah, Suhailah Lim, Su-Yin Multi-actor system dynamics in access to disease-modifying treatments for multiple sclerosis in Southeast Asia: A regional survey and suggestions for improvement |
| description |
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. Offlabel 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. |
| format |
Article |
| author |
Viswanathan, Shanthi Vijayasingham, Lavanya Laurson-Doube, Joanna Quek, Amy M.L. Tan, Kevin Yeo, Tianrong Seinn, Mya Mya Aye Ohnmar, Ohnmar Estiasari, Riwanti Yassin, Norazieda Hiew, Fu Liong Pasco, Paul M. Hoang, Nghia T.T. Keosodsay, Saysavath Siritho, Sasitorn Apiwattanakul, Metha Ros, Sina de Deus, Brigido Simao Dias Remli, Rabani Abdullah, Suhailah Lim, Su-Yin |
| author_facet |
Viswanathan, Shanthi Vijayasingham, Lavanya Laurson-Doube, Joanna Quek, Amy M.L. Tan, Kevin Yeo, Tianrong Seinn, Mya Mya Aye Ohnmar, Ohnmar Estiasari, Riwanti Yassin, Norazieda Hiew, Fu Liong Pasco, Paul M. Hoang, Nghia T.T. Keosodsay, Saysavath Siritho, Sasitorn Apiwattanakul, Metha Ros, Sina de Deus, Brigido Simao Dias Remli, Rabani Abdullah, Suhailah Lim, Su-Yin |
| author_sort |
Viswanathan, Shanthi |
| title |
Multi-actor system dynamics in access to disease-modifying treatments for multiple sclerosis in Southeast Asia: A regional survey and suggestions for improvement |
| title_short |
Multi-actor system dynamics in access to disease-modifying treatments for multiple sclerosis in Southeast Asia: A regional survey and suggestions for improvement |
| title_full |
Multi-actor system dynamics in access to disease-modifying treatments for multiple sclerosis in Southeast Asia: A regional survey and suggestions for improvement |
| title_fullStr |
Multi-actor system dynamics in access to disease-modifying treatments for multiple sclerosis in Southeast Asia: A regional survey and suggestions for improvement |
| title_full_unstemmed |
Multi-actor system dynamics in access to disease-modifying treatments for multiple sclerosis in Southeast Asia: A regional survey and suggestions for improvement |
| title_sort |
multi-actor system dynamics in access to disease-modifying treatments for multiple sclerosis in southeast asia: a regional survey and suggestions for improvement |
| publisher |
Elsevier |
| publishDate |
2024 |
| url |
http://eprints.um.edu.my/45280/ https://doi.org/10.1016/j.msard.2024.105555 |
| _version_ |
1811682113281327104 |
| score |
13.211869 |