Kuala Lumpur, 16 August 2018 – TheInstitute for Democracy and Economic Affairs (IDEAS) has officially launched its project “Championing for the Rare” with the Rare Disease Symposium and the Brief IDEAS paper, “National Policy on Rare Diseases: Living with Dignity, In Search of Solutions for Rare Diseases.” The paper is co-authored by Prof. Dr Thong Meow Keong and Dr Azlina Ahmad-Annuar from University of Malaya.
The paper was presented to Dato’ Dr Haji Azman bin Bakar, Deputy Director General (Health), Ministry of Health at the symposium today. The symposium and publication highlight the challenges faced by rare disease patients as well as gathering stakeholders together to find solutions to the issues faced by rare disease patients.
The paper highlights 4 main challenges that rare disease patients face which includes lack of recognition and inclusiveness of rare disease in national health policy; lack of awareness and comprehensive healthcare provisions; lack of access to medications and lack of protection of rights and dignity of individuals with rare diseases. One of the major obstacles in addressing the challenges of rare disease patients is that there is no official definition, policy or legislation on rare disease.
The paper proposes the following recommendations to the government:
- Recognise the need to have accurate data relating to rare diseases in Malaysia.
- Enact legislation on Rare Disease and Orphan Drug to protect the rights of rare diseases patients.
- Create awareness and educational programmes to highlight the challenges faced by patients as well as increase the focus in the training of health professionals and genetic counsellors on rare diseases.
- Implement pre-pregnancy, pregnancy care and newborn screening programmes.
- Increase the expertise and capacity of laboratory facilities to diagnose serious genetic diseases.
- Increase the funding for treatment and rehabilitation services.
- Focus on research and development in rare disease.
In his keynote speech, Dato’ Azman commended IDEAS for organising the symposium, saying that “this is a delicate issue that needs to be addressed, especially because it affects our children, the future generation of Malaysia.” Dato’ Azman noted the challenges facing the Ministry in handling rare diseases, commenting that “there is currently no official registry for rare diseases in Malaysia. Costs remain the significant barrier, as research and treatment for rare diseases is very expensive.”
Dato’ Azman added “global collaboration in this issue is very important. Clinical geneticists in the Ministry of Health participate in many collaborations, but the current budget we receive is too small to test samples in labs overseas. Since 2008, an allocation of RM 3000 a year is given to the Ministry to outsource test overseas, but this amount is not enough. We are currently looking into how we can expand local services by leveraging on partners overseas. The key question is how do we complement each other in our efforts to find solutions?”
Furthermore, Dato’ Azman stressed “there is a need for legislation that protects the rights of individuals with rare diseases. In keeping with international standards and practices, adequate funding must also be legislated. Co-operation from insurance companies is also crucial, and we need to see how we can get them on board.”
Dato’ Azman reiterated the promise made in the Buku Harapan to “increase budget allocation and will provide incentives for the participation of private companies and charitable bodies to tackle rare diseases.”
Ali Salman, CEO of IDEAS, expressed that “We hope that the government will fulfil their promise in the manifesto to address the concerns of rare disease and ensure that these patients have equal access to quality healthcare.”
Brief Ideas No. 10 “National Policy on Rare Diseases: Living with Dignity, In Search of Solutions for Rare Diseases” can be downloaded here.
