A new charity fund has been set up to help Singaporeans with rare diseases who cannot afford treatment.
The Rare Disease Fun, established by the Ministry of Health (MOH) and the SingHealth Fund jointly, will combine community donations and Government-matched contributions to financially assist Singaporean citizens with specific rare diseases.
For some rare diseases, effective treatments are available which can increase patients’ life expectancies and improve their quality of life but medicines can cost up to hundreds of thousands of dollars a year and treatment is often life-long.
The fund aims to encourage community donations to support Singaporeans with rare conditions who are treated in public healthcare facilities, but can’t afford treatment. For every S$1 the public donates, the Government will provide S$3 in matching contributions. The Government will also fund the operating expenses of the Rare Disease Fund to ensure all donations received are used solely for supporting patients.
(From left) Professor Alex Sia, CEO of KK Women’s and Children’s Hospital; and Mr Edwin Tong, Senior Minister of State for Health, interacting with patient Katerina Loh as Katerina’s mum, Galina Ivanovo, looks on.ST PHOTO: GIN TAY (straitstimes.com)
The fund’s committee has approved an initial list of five medicines treating three rare diseases for funding:
Primary Bile Acid Synthesis Disorder (Cholic Acid)
Gaucher Disease – Type 1 or 3 (Imiglucerase (Cerezyme), Velaglucerase Alfa (VPRIV), Taliglucerase alfa (Elelyso)
Hyperphenylalaninaemia due to tetrahydrobiopterin (BH4) deficiency (Sapropterin dihydrochloride (Kuvan)
Singaporeans undergoing treatment at public healthcare facilities for these rare diseases who need financial assistance can apply through the medical social workers. To date, about S$18 million has been raised, according to the MOH.
Taking into account Government matching, the fund currently stands at S$70 million.
“By providing three-to-one donation matching, we hope that the larger community including philanthropists, companies, community groups and individuals will come together to jointly support these patients and their families as part of our caring and inclusive society,” said Senior Minister of State for Health Edwin Tong.