3rd Feb 2021
Mr Leon Perera
MP for Aljunid GRC
Question No. 631
To ask the Minister for Health (a) what is the number of applications under the Rare Disease Fund that the Ministry has received to date; (b) what are the specific eligibility criteria or conditions that applicants must meet to receive support from the Fund; (c) what are the specific eligibility criteria or conditions for selection of rare diseases to be covered under the Fund; and (d) whether the Ministry can provide an update on the timeline of more rare diseases to be covered under the Fund.
The Rare Disease Fund (RDF) is a charity established in 2019 to support Singapore Citizens suffering from rare genetic diseases, where medication is often very costly and required for life. Through the RDF, society and the Government collectively support the financial needs of Singapore Citizens with rare diseases. All donations to the RDF are eligible for a 250% tax deduction, and the government provides $3 in matching contributions for every dollar of public donations toward the RDF.
The RDF is operated largely on an endowment basis, where investment income is generated to support patients. This ensures that the support provided is sustainable. RDF can only support new beneficiaries, new conditions and treatments, when funds are available.
Based on the funds raised to date, six medicines for four conditions are currently supported by the RDF. There are currently six beneficiaries supported by the RDF.
Singaporeans undergoing treatment at public healthcare institutions for rare disease conditions covered by RDF can apply for support through the medical social workers. Each RDF application is carefully assessed by an independent RDF Committee, comprising representatives from NGOs, public healthcare institutes, and private corporations. As the Committee has to prioritise the allocation of limited funds, it takes into account various factors such as whether the patient is clinically eligible and likely to benefit from the treatment, their family’s ability to afford the treatment either in part or in whole, including any extenuating circumstances faced by the patient and family, and whether other financing support is available. The support is reviewed annually for each beneficiary, to factor in changes in their clinical condition and financial situation.
The RDF funds are currently already fully allocated, and new beneficiaries, conditions or treatments can only be approved when additional funds are raised.
The RDF represents an important plank of community support for Singaporeans with rare diseases who require substantial financial assistance. I encourage everyone to donate generously to this cause, so that more can benefit from the RDF.