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PETALING JAYA: A local group of experts has urged the government to push for the establishment of a trust fund to improve access to treatment for rare diseases, an idea that the Ministry of Health proposed last year.
In a statement, the Institute for Democracy and Economic Affairs (IDEAS) said that “a government-led trust fund model should be based on the principles of sustainability and good governance,” citing previous efforts to establish local trust funds and foreign initiatives. Similar.
“To ensure good governance, the government will need to decide on objective criteria for access and prioritization, as well as determine how the trust fund relates to the broader health system.”
He said this by publishing a policy document titled “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 to maximize access to different treatments for a variety of diseases and conditions.
“Malaysia should prioritize a flexible approach to regional collaboration. Malaysia should undertake efforts to enhance regional collaboration building on existing regional platforms such as the Asia-Pacific Economic Cooperation or the Association of Southeast Asian Nations. “
Commenting on the document, IDEAS Executive Director Tricia Yeoh said she was “very encouraged by the Malaysian government’s intentions to seek a framework for rare diseases.
“The health ministry is expected to adopt the IDEAS recommendations to ensure that a trust fund for rare diseases is established, to further expand access to treatment and ultimately improve the lives of patients suffering from rare diseases.” .
The document was presented as part of the IDEAS Regional Conference on Rare Diseases in Malaysia and Asia Pacific, which will take place today and tomorrow, and will be attended by government officials, academics and patient groups.
