The Rare Diseases Day Symposium: Towards a National Policy

On the 28th of February, in conjunction with Rare Disease Day, The Institute for Democracy and Economic Affairs (IDEAS) held a Rare Disease Symposium in an effort to continue to push for a National Policy for Rare Diseases. As part of IDEAS’ Championing for the Rare Project, this symposium 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 Symposium saw the launch of IDEAS’ latest policy paper titled “Improving Access to Orphan Drugs in Malaysia,” written by Dr Asrul Akmal Shafie from University Sains Malaysia. 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 paper was presented to YB Senator Bathmavathi Krishnan at the symposium today. Senator Bathmavathi gave a speech where she noted that since the election of the new government, leaders have been more willing to listen to issues in relation to rare disease. 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.

The highlight of the symposium was a panel discussion and Q&A session with YB Maria Chin, Dato Jagjit Singh, Puan Azuwana Supian and Dr Asrul Akmal Shafie. The panel discussion addressed multiple issues that mainly focused on how to finance orphan drugs.  Puan Azuwana said that the ministry is in the process of coming up with a definition for rare disease. She also agreed on the importance of employing genetic counsellors in government hospitals. Dato’ Jagjit stated that this is being discussed within the ministry but decisions are still pending. He also stressed that this would be tricky to accomplish in the midst of trying to reduce the number of civil servants in the country. Dato’ Jagjit added that a co-payment mechanism would not be feasible in the Malaysian healthcare context as the country has never increased the price of healthcare.

In his closing address, IDEAS CEO Ali Salman highlighted that we have made progress over the last few years from no allocation to more sustained allocation. He expressed his support for the establishment of a government trust fund for rare disease as proposed by Dato’ Jagjit and exploring regional pooled procurement as a long term option to establish sustainable funding.

February 28, 2019

10.00am to 5.00pm

Auditorium, Asian International Arbitration Centre, Bangunan Sulaiman, Jalan Sultan Hishamuddin, Kuala Lumpur

2019-03-06T14:22:46+00:00 6th March 2019|Previous Events|Comments Off on The Rare Diseases Day Symposium: Towards a National Policy