SGMCF328 Turbocharged July 3, 2019 Share July 3, 2019 (edited) Catch it on news last night. This rare diseases fund is a very good initiative started by MOH, to help families cope with high medical and treatment cost for rare diseases. One of the family interviewed face a monthly medical bill of up to $24K, which is beyond imagination for even a typical middle income family. I hope more can be aware of this RDF, and help to spread the news, so that families in need can benefit from the scheme. It would be good if we could contribute to the fund to help the needy. More information on the RDF is available on www.kkh.com.sg/rarediseasefund New hope for patients with rare diseases with the launching of a new fund https://www.straitstimes.com/singapore/new-hope-for-patients-with-rare-diseases-with-the-launching-of-a-new-fund SINGAPORE - Singaporeans with three forms of rare diseases now have access to financial aid to help with medical expenses which can run into thousands of dollars each month. Launched on Tuesday (July 2) by the Ministry of Health (MOH) and SingHealth Fund, the Rare Disease Fund (RDF) will, for a start, fund five medicines used to treat the three conditions - primary bile acid synthesis disorder, Gaucher disease and Hyperphenylalaninaemia due to tetrahydrobiopterin (BH4) deficiency. New charity fund to provide financial support for Singaporeans with rare diseases https://www.channelnewsasia.com/news/singapore/charity-fund-health-rare-disease-treatment-cost-11682554 SINGAPORE: A new charity fund has been set up to help Singaporeans with rare diseases who cannot afford treatment costs. Jointly established by the Ministry of Health (MOH) and the SingHealth Fund, the Rare Disease Fund will combine community donations and Government-matched contributions to financially support Singapore citizens with specific rare diseases, MOH announced in a press release on Tuesday (Jul 2). Singaporeans with 3 rare diseases will get funding help for treatment https://www.tnp.sg/news/singapore/singaporeans-3-rare-diseases-will-get-funding-help-treatment Launched yesterday by the Ministry of Health (MOH) and SingHealth Fund, the Rare Disease Fund (RDF) will, for a start, support the use of five medicines to treat the three conditions - Primary bile acid synthesis disorder, Gaucher disease and hyperphenylalaninaemia due to tetrahydrobiopterin (BH4) deficiency. The hope is that over time, more rare diseases and medications will be added to the list, an MOH statement said yesterday. Edited July 3, 2019 by SGMCF328 ↡ Advertisement 5 Link to post Share on other sites More sharing options...
Kusje Supersonic July 3, 2019 Share July 3, 2019 this should be added and covered by medishield. Link to post Share on other sites More sharing options...
Maxus-MIFA9 Supersonic July 3, 2019 Share July 3, 2019 Said SC only .... Does PR qualified ? .... Link to post Share on other sites More sharing options...
Maxus-MIFA9 Supersonic July 3, 2019 Share July 3, 2019 Lets says if PR qualify, then make them surrender their original citizenship. Just can't prevent some from coming here for PR and after cure, return back to their original country for good... 2 Link to post Share on other sites More sharing options...
Kusje Supersonic July 3, 2019 Share July 3, 2019 Lets says if PR qualify, then make them surrender their original citizenship. Just can't prevent some from coming here for PR and after cure, return back to their original country for good... Huh? Why you wanna keep a sick fellow? Link to post Share on other sites More sharing options...
Maxus-MIFA9 Supersonic July 3, 2019 Share July 3, 2019 Huh? Why you wanna keep a sick fellow? The question is when they apply for PR, did ICA/NRB check their medical history ? Or like foreign workers, send them for medical check up. Link to post Share on other sites More sharing options...
Maxus-MIFA9 Supersonic July 3, 2019 Share July 3, 2019 I am from Medeka Generation. Work so hard and contributed to nation building. PR came and wants to have equal benefits ... Link to post Share on other sites More sharing options...
Sosaria Twincharged July 3, 2019 Share July 3, 2019 (edited) I am from Medeka Generation. Work so hard and contributed to nation building. PR came and wants to have equal benefits ... As far as the govt is concerned, the "nation building" is mainly through paying income taxes and other taxes. SC, PR all pay and pay. Question is, why so high cost for treating these conditions? Big pharma is laughing all the way to the bank. We should support the development and use of cheaper generics like in thailand and india. Edited July 3, 2019 by Sosaria Link to post Share on other sites More sharing options...
Lala81 Hypersonic July 3, 2019 Share July 3, 2019 As far as the govt is concerned, the "nation building" is mainly through paying income taxes and other taxes. SC, PR all pay and pay. Question is, why so high cost for treating these conditions? Big pharma is laughing all the way to the bank. We should support the development and use of cheaper generics like in thailand and india. Generics are a good thing, but doesn't really mean things get cheaper. For such condition, often the generics price to the originals, cos the volume of such medicines sold worldwide is low. The generics concept is generally a good idea, but it doesn't always work for every type of medication. Anyway generic manufacturing is fraught with QC issues. You can see by the recent spate of medicine recalls even for drugs that have been manufactured as generics for more than a decade. Pharmaceuticals make up a substantial percentage of our industrial production as well. Pharma is a business, so it's generally efficient, but pricing is always an issue. Link to post Share on other sites More sharing options...
Lala81 Hypersonic July 3, 2019 Share July 3, 2019 Our local approach is the institutions to buy in bulk. And govt subsidises quite a lot of the more common medicines. But for super rare conditions like the above (i've personally never even encountered a patient with these 3 conditions), if there is treatment, it's likely not to fall under the regular medicine cost reviews. Link to post Share on other sites More sharing options...
Kyrios Turbocharged July 3, 2019 Share July 3, 2019 Thumbs up for this initiative by the gahmen. They shud open up the scheme to other more weird diseases like the tree bark disease, zombie disease and other weird ailments. Link to post Share on other sites More sharing options...
SGMCF328 Turbocharged July 5, 2019 Author Share July 5, 2019 Thumbs up for this initiative by the gahmen. They shud open up the scheme to other more weird diseases like the tree bark disease, zombie disease and other weird ailments. I read that more rare diseases and medication for them will be added to the list in the future. For now, the aim is go garner more awareness towards rare diseases and RDF, and only when fund are enough to sustain the support given to the families in needs, MOH will then consider to revise the list. Our local approach is the institutions to buy in bulk. And govt subsidises quite a lot of the more common medicines. But for super rare conditions like the above (i've personally never even encountered a patient with these 3 conditions), if there is treatment, it's likely not to fall under the regular medicine cost reviews. Bulk purchase is not possible for such medication as beside low in demand, high cost (production plus R&D) and expiry date are the other key consideration. Said SC only .... Does PR qualified ? .... I personally feels that the fund should be used for Singaporean. Most PR will went back to their home town one day, and it is not financially logical for us to foot their bill, indirectly. 6 Link to post Share on other sites More sharing options...
1fast1 Supersonic July 5, 2019 Share July 5, 2019 (edited) Thumbs up for this initiative by the gahmen. They shud open up the scheme to other more weird diseases like the tree bark disease, zombie disease and other weird ailments. Don't forget government created killer nanorobot infection. Edited July 5, 2019 by Turboflat4 ↡ Advertisement 1 Link to post Share on other sites More sharing options...
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