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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.

 

 

 

 

(芙蓉15日讯)马来西亚溶酶体疾病协会获卫生部拨款200万令吉,并积极与药厂的沟通及协调下,成功争取更低廉的药物,以有限的资金帮助7名不幸患上溶酶体疾病并苦等多年的病人。

马来西亚溶酶体疾病协会今日号召病患及家人聚集在芙蓉庆祝世界罕见疾病日,主席李意盛召开新闻发布会时向媒体传达喜讯。

他说,每名病人平均需要每年100万令吉的医药费,但经过与药厂的争取下成功以200万令吉为7名病人争取药物,预计于本月尾即可在吉隆坡医院为病人注射药物。

他强调,共有17名病人等待药物多年,随着共有7名病人得到药物,尚有10名病人仍等待款项和药物。

“我们于去年12月6日举办生命无价慈善晚宴中,卫生部长拿督斯里苏巴马念宣布拨款200万令吉,当时我们确实感到非常高兴,但下一秒就立即担心如何有效分配款项,究竟谁能得到药物和谁被取舍的难题。”

他表示,最终选出7名病人注射药物,他们分别是6名患上第二型黏多糖体贮积症(MPS2)和1名患上庞贝氏症的病人,他们分别等待药物治疗长达2年至6年,如今可在最短时间内得到注射药物,舒缓病情。

他感谢苏巴马念并希望卫生部的200万令吉拨款能成为常年拨款,同时其余10名仍等待款项及药物的病人,能得到卫生部的关注。

李意盛吁关注罕见疾病

李意盛表示,该协会庆祝世界罕见疾病日,旨在呼吁民间能关注有关疾病。

他说,每年的2月28日是世界罕见疾病日,而该协会则展延至今日才庆祝,并召集18名病人及家人同欢共庆。

他表示,共有44名病人向该协会登记,其中5人因脑部发育问题而无法用药,2名病人逝世,19名病人得到药物,加上7名本月杪得到药物的病人,该协会仍需要为其余10名病人争取拨款及药物。

“其实世界上共有7000多种罕见疾病,而溶酶体疾病只占了50种而已,我们协会只找到44名病人,尚有更多病人还未被发现,因此只要我们协会进一步推展及为病人争取,就会发现更多患上类似疾病的病人。”

他呼吁政府效仿日本、韩国和台湾,能施行全民投保,保障全民的健康。



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