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).
Rare diseases are conditions that affect a very small number of people. They are often diagnosed during childhood and are mostly genetic in origin.
Many rare diseases do not have available treatments and patients often have shorter lifespans as a result, but for some rare diseases, effective treatments are available which can increase patients’ life expectancies and improve their quality of life.
These medicines can cost up to hundreds of thousands of dollars a year, explained MOH, and patients often need to take them for their whole lives.
As such, the new fund aims to encourage community donations to support Singaporeans with rare diseases who are treated in public healthcare institutions, but cannot afford treatment costs. For every S$1 the public donates, the Government will provide S$3 in matching contributions.
In addition, the Government will also fund the operating expenses of the Rare Disease Fund to ensure all donations received are used solely for supporting patients.
“This will give support to patients whose treatment costs remain unaffordable even after Government subsidies, insurance and financial assistance (such as Medication Assistance Fund, MediFund) have been provided, due to the high-cost nature of the treatments,” said MOH.
The fund’s committee has approved an initial list of five medicines treating three rare diseases for funding.
These are:
(Table: Ministry of Health)
Applications for patients with these three conditions have started.
Singaporeans undergoing treatment at public healthcare institutions for these rare diseases who need additional financial assistance can apply through the medical social workers at their public healthcare institution.
A committee made up of volunteers with “diverse expertise, experiences and perspectives” will assess patient applications as well as the list of medicines to be covered under the fund. So far, the fund has approved applications from two patients.
To date about S$18 million has been raised, according to 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.
The Rare Disease Fund will have Institution of Public Character status, which means all donations to the fund will be eligible for a 250 per cent tax reduction.
It has adopted an endowment approach, where the interest income generated is used to support patients.
