Policy - Solidarity Amidst Rarity: Ideas - Reforms for Equitable and - Sustainable Rare Disease

Policy - Solidarity Amidst Rarity: Ideas - Reforms for Equitable and - Sustainable Rare Disease

19 Oct 2023

The patient factor takes into account the population’s socioeconomic determinants resulting in the incorporation of the five corresponding abilities of individuals and populations: to perceive, to seek, to reach, to pay, and to engage in healthcare. [...] In addition to the patient factors, some features of the healthcare system could affect the process, including the healthcare providers’ ability to provide information and education to patients and their families regarding the availability of relevant services and treatment. [...] I actually went to three different doctors in Malaysia, and three different doctors in the US.” 1.3 Lack of training facilities In the Asia-Pacific region, one of the main challenges related to the rare disease patient treatment journey is the limited training of healthcare providers.17 The lack of local training facilities in Malaysia was reported as one major reason for the lack of knowledge amo. [...] The Ministry of Higher Education can also collaborate with the Ministry of Health, Ministry of Women, Family and Community Development, and the Ministry of Science, Technology and Innovation to establish research and training funds to provide innovative solutions to rare disease issues and to train more professionals. [...] www.ideas.org.my 29 “In order to create a viable business model for rare disease treatment, regulation is needed to correct the structural imbalance in the risk and reward for rare disease treatment.” For instance, the United States government legislated the Orphan Drug Act (1983), with the aim to correct structural imbalances in the risk and reward for rare disease treatment.

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60
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Malaysia

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