Singaporeans Diagnosed with Rare Diseases and Coverage by Rare Disease Fund

Mr Chua Kheng Wee Louis asked the Minister for Health (a) what is the number of Singaporeans currently diagnosed with rare diseases; (b) what is the percentage of such Singaporeans with rare diseases which are covered by the Rare Disease Fund (RDF); (c) how does the RDF move from covering medicines used to treat the initial three rare diseases to the current five; and (d) whether the RDF can move from covering medicines to treat conditions to cover rare diseases instead.

An estimated 2,000 to 3,000 people are afflicted with chronic rare diseases in Singapore. For the majority of this population, our national healthcare financing schemes, such as MediSave, MediShield Life and subsidies, provide financial assistance for treatments that this group of patients may require. Patients who face difficulty in affording their bills can also apply for MediFund through the public health institutions. For a small percentage, additional financial assistance may be required. The Rare Disease Fund (RDF) was set up to support high-cost medications for this group. Since its establishment in 2019, RDF has supported nine patients, which represents about 0.4% of Singaporeans with rare diseases.

Given the limited size of the RDF, funding support is focused on treatments for rare conditions that are life-threatening and where the treatment is effective in extending the patient's lifespan. RDF lists new medications when it is able to attract donations to generate sufficient investment income to support patients who would, typically, require the medicines on a lifelong basis. Since its inception, RDF has expanded its funding support to cover seven medications for five conditions. RDF will continue to raise more donations and explore the coverage of more rare disease conditions. Donations attract three-for-one Government matching and enjoy tax deduction of 2.5 times the donation amount.