In a statement, the Institute for Democracy and Economic Affairs (IDEAS) said “a government-led trust fund model must be premised on the principles of sustainability and good governance,” citing previous efforts to set up local trust funds and similar overseas initiatives.
“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.”
It said this in releasing a policy paper titled “The Next Steps for Rare Diseases in Malaysia: Improving Access to Rare Disease Treatments”, which outlines how best to govern such a fund and advocates for regional collaboration.
IDEAS also noted the need for regional collaboration in order to maximise access to different treatments for a variety of diseases and conditions.
“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 the Asia-Pacific Economic Cooperation or the Association of Southeast Asian Nations.”
Commenting on the paper, IDEAS CEO Tricia Yeoh said she was “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.”
The paper was presented as part of IDEAS’ Regional Conference on Rare Diseases in Malaysia and the Asia Pacific, taking place today and tomorrow, will be attended by government officials, academics and patient groups.
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