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Life saving drugs quest16 March 2015
Seremban, 16/3/15- Malaysia Lysosomal Disease Association(MLDA) obtained the 2 mil grant from Ministry of Health(MOH) and after entering into many rounds of negotiations with pharmaceutical companies, MLDA manage to receive the same dosage of drugs needed at a lowered rate for a limited period of time to help save the lives of seven patients affected with Lysosomal Storage Diseases(LSD) with that grant provided by MOH.
MLDA President, Ir Lee Yee Seng took the opportunity to convey the above mentioned good news to the media and public at large during a press conference in conjunction with celebrating World Rare Disease Day with its patients and family members which took place in Seremban.
"It was during our Charity Dinner entitled Every Life Counts held on 6 December 2014 that the Health Minister Datuk Seri Dr. S Subramaniam announced the 2 million ringgit grant to MLDA intending to save the lives of those affected with LSD. Of course, we are indeed truly happy and grateful for such an opportunity but at the same time we also worry about how to effectively allocate the funds as in who can get the drugs and who will be the ultimate beneficiaries since there are 17 affected patients with a limited grant given!
We definitely want to save each and every of them!" He said that eventually physicians had elected seven patients based on several criteria; such as their medical condition. These seven patients are suffering from MPS2 and Pompe disease who had waited for medical treatment from a span of 2 to 6 years, they are now going to receive Enzyme Replacement Therapy (ERT) which should halt the condition and improve their quality of life.
He provided that a total of 44 patients are registered with the Association to which five patients were experiencing brain complications and thus is unfit for medication while two patients had died, 19 patients received the drug fully reimbursed by government, 7 patients will be save this year, the rest 10 are still in the waiting list due to shortage of budget. "
" He called on the government to benchmark some of the Asian countries such as Japan, South Korea and Taiwan regarding the implementation of National Health Care Insurance in order to provide comprehensive care and protection for public health.
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