KUALA LUMPUR, Feb 28 — Malaysia needs to establish a National Rare Disease Policy so that information, diagnosis and treatment of those with rare diseases are more strategic and being developed with patients as its guide, said Senator Datuk Ras Adiba Radzi.
In her speech as one of the panelists for Rare Disease Malaysia Family Gathering 2022 held virtually on Sunday in conjunction with Rare Disease Day today she said Malaysia should lead the world in the use of data and technology to prevent illness and not just treat it.
“Malaysia must establish Genomic Medicine Service (GMS) which can integrate genomic technologies, including whole-genome sequencing, into routine clinical care and not just by a general understanding of the disease,” she said.
Ras Adiba said by forming GMS, Malaysia can diagnose conditions before symptoms occur and deliver personalised treatment, informed not just by general understanding of disease but by own personal, de-identified medical data – including genetic make-up.
“For too long treatment of those with a rare disease was been seen as a public policy afterthought rather than as a priority. And this is why the establishment of the National Rare Disease Policy is the super turning point,” said Ras Adiba who is also OKU Sentral president.
She said the policy is needed as many parents have to cope with a sick child with a rare disease but with little information as to what the disease is, let alone where they might find treatment.
General Practitioners (GPs) are frustrated as they are unsure where the best centre of expertise is to treat a particular rare disease, said Ras Adiba.
She said for that reason she is determined to include rare diseases and albinism as one of the categories within the Persons with Disabilities Act 2008.
This is to ensure their welfare and wellbeing will be taken care of by the government through detailed policy planning and implementation, she added.
“ As the senator who represents Persons with Disability (PwDs), I am pursuing the evaluation report on the previous Persons with Disabilities Action Plan. We will be drafting a more focused version for the next phase of the 2023-2030 action plan that contains more key proposals to further benefit a wider PwDs ecosystem,” said Ras Adiba.
She said for a very long time, people with rare diseases have suffered in silence, with many facing insurmountable financial burdens in care and treatments.
Most rare diseases are lifelong and involve many body systems while the specific treatments, when available, are often unaffordable while wrong diagnoses can gravely affect their health and well-being, she added.
Source: BERNAMA News Agency