- IDEAS calls on the government to implement the Rare Disease Framework developed by the Ministry of Health.
- IDEAS recommends improving access to treatment by establishing a Trust Fund based on the principles of sustainability and good governance.
- In parallel, Malaysia should pursue regional collaboration to increase access to rare disease treatment using its position as APEC chair as a platform.
Kuala Lumpur, 27 October 2020 – The Institute for Democracy and Economic Affairs (IDEAS) has launched a policy paper on “The Next Steps for Rare Diseases in Malaysia: Improving Access to Rare Disease Treatments” by Laurence Todd and Vaisnavi Rao.
In 2019, the Malaysian government committed to establishing a framework for managing rare diseases. In regard to improving access to treatments, the government has indicated the interest to pursue one, setting up a trust fund and two increased regional collaboration.
This IDEAS Policy paper on the Next Steps for Rare Disease in Malaysia explores these two options and puts forward policy recommendations on how to improve access to treatments for patients with rare diseases.
A government-led trust fund model must be premised on the principles of sustainability and good governance. This is based on lessons learnt from previous efforts to establish a trust fund and lessons from other countries. Hence, the government will need to allocate the necessary public funds as part of a broader strategy to leverage financing to ensure sustainability. To ensure good governance, the government will need to decide on objective criteria for access and prioritisation as well as determine how the trust fund relates to the wider healthcare system.
Finally, Malaysia should prioritise a flexible approach to regional collaboration. Malaysia should embark on efforts to improve regional collaboration by building on existing regional platforms such as APEC or ASEAN. IDEAS’ research shows that regional collaboration can support countries to widen access to treatments for rare disease.
“I am very encouraged by the Malaysian government’s intentions to pursue a framework for rare diseases. It is hoped that the Ministry of Health will take up IDEAS’ recommendations on ensuring that a Rare Disease Trust Fund is established, to further expand treatment access and ultimately improve the lives of patients suffering from rare diseases”, commented Tricia Yeoh, CEO of IDEAS.
The paper was presented as part of IDEAS Regional Conference on Rare Diseases in Malaysia and the Asia Pacific taking place 27th-28th October, attended by government, academia and patient groups.
The policy paper on “The Next Steps for Rare Diseases in Malaysia: Improving access to treatments” can be downloaded at https://bit.ly/RDnextsteps
For media enquiries: firstname.lastname@example.org