Singaporeans Diagnosed with Rare Diseases and Coverage by Rare Disease Fund

NOTICE PAPER NO. 1804
NOTICE OF QUESTION FOR WRITTEN ANSWER
FOR THE SITTING OF PARLIAMENT ON 22 MARCH 2023

Name and Constituency of Member of Parliament
Mr Chua Kheng Wee Louis
MP for Sengkang GRC

Question No. 2827

To ask 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.

Answer

1     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 these group of patients may require. Patients who face difficulty in affording their bills can also apply for MediFund through the PHIs. 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 9 patients, which represents about 0.4% of Singaporeans with rare diseases.  

2     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. The 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 7 medications for 5 conditions. The RDF will continue to raise more donations and explore the coverage of more rare disease conditions. Donations attract 3 for 1 government matching and enjoy tax deduction of 2.5 times the donation amount.