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Life saving drugs quest

16 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. 
"Generally, the average cost per patient would require 1 million ringgit annually but after numerous negotiations with pharmaceutical companies, they finally agreed to use 2 million ringgit to save seven patients. The drug treatment is expected to start by the end of this month in Hospital Kuala Lumpur" said the President of MLDA. He further emphasize that there were a total of 17 patients altogether patiently waiting to be treated with suitable drugs till date, since now seven of them are about to receive them, the other 10 patients are still eagerly waiting for their turn to be treated.

"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. 
Ir Lee extend his most sincere appreciation to Datuk Seri Dr S.Subramaniam for the 2 mil grant and hope this will become an annual allocation as ERT is a life long treatment-without it the conditions of patients will deteriorate. He also hope that the Health Ministry will pay attention to the remaining 10 patients that are still waiting for access to medication once more budget are granted. 
Ir Lee said that the celebration of World Rare Disease Day which is usually on the last day of February is to appeal to the public on concern about rare diseases and this year the association celebrated with 18 patients and their families in conjunction with MLDA AGM & 4th annual anniversary.

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. "
In fact, there are more than 7000 type of rare diseases in the world, and LSD is only a small part of it; bringing only 50 type of it, so far, since establishment in 2011, we only managed to locate 44 patients in Malaysia. We are positive that there are more patients out there! So long as we continue providing awareness and at the same time maintaining services and care to our patients, we will be able to find and help more patients with similar diseases in the future.

" 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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