Kuala Lumpur, 28 February 2019 – In conjunction with World Rare Disease day, The Institute of Democracy and Economic Affairs (IDEAS) published a policy paper titled “Improving Access to Orphan Drugs in Malaysia,” written by Dr Asrul Akmal Shafie from University Sains Malaysia.

The paper was presented to YB Senator Bathmavathi Krishnan at the symposium today. The symposium and publication aimed to highlight the difficulties faced in accessing pharmaceutical treatment options for rare diseases, orphan drugs, and potential funding options to resolve this. IDEAS’ Championing for Rare project is an opportunity for the engagement of multiple stakeholders to provide a diversity of perspectives towards the proposed solutions for rare diseases.

The paper specifically explores various innovative solutions to address the problems associated with access to orphan drugs which are often associated with high prices. The author, suggests numerous immediate and long term strategies to manage the high prices of orphan drugs.

• Improvements in the mechanisms for negotiating drug pricing
• Implementing managed entry agreements
• Allocation of a specific rare disease fund in a transparent manner
• Establishment of a regional network to improve sourcing and leverage on larger markets.

During her speech, YB Senator Bathmavathi noted that since the election of the new government, leaders have been more willing to listen to issues in relation to rare disease. The government has provided an additional 16 million towards rare diseases on top of the 50 million stated in budget 2019 which is allocated towards various rare diseases. She added that the government is currently in the process of setting up a framework and committee on rare diseases which has been a positive indication of their commitment towards this agenda. However, she also stressed the need for higher priority on research and development for rare diseases.

IDEAS CEO Ali Salman outlined the progress of the project which included the formation of a working group and engagement with various patient groups. He also stated that “the complexity of rare diseases means that we cannot include everyone in this process despite our best possible efforts but we hope that today’s symposium will help us in meeting this shortcoming”.

Rare diseases tend to draw the short straw in the current climate of competing healthcare needs. As they are presumed to only affect a small number of Malaysians and are considered as non-communicable diseases, little attention is paid to these diseases. Therefore, it is imperative that the government establishes a clear funding framework to ensure patients receive the holistic care that they need

Policy Ideas No.58 “ Improving Access to Orphan drugs in Malaysia” can be downloaded here

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