Applications Made for Rare Disease Fund

Mr Leon Perera asked 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.

Often diagnosed in childhood, most rare diseases are genetic in origin. Many rare diseases (defined as less than 1 in 2000 people) do not have available treatment and patients often have shorter lifespans as a result. For some rare diseases where effective treatments are available, medicines can substantially extend their life expectancies and improve their quality of life. 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 generated is used to support patients, as a more sustainable means to support beneficiaries over their lifetime.

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 members with diverse backgrounds from the community sector, private corporations, and healthcare. The Committee 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 Committee has approved six medicines for four conditions to be supported by the RDF, benefiting six patients.

The RDF represents an important plank of community support for Singaporeans with rare diseases who require substantial financial assistance. The RDF Committee will do their best to raise more funds and the Government remains committed to a 3:1 matching so that more can benefit from the RDF.