Singapore has about 2,000 to 3,000 patients afflicted with chronic rare diseases

Singapore has about 2,000 to 3,000 patients afflicted with chronic rare diseases

An estimated 2,000 to 3,000 people are afflicted with chronic rare diseases in Singapore, said Minister for Health, Ong Ye Kung.

This was in response to a written question filed by Workers’ Party Member of Parliament for Sengkang GRC, Mr Louis Chua Kheng Wee, on Wednesday (22 Mar).

Mr Chua had asked for the number of Singaporeans currently diagnosed with rare diseases; what is the percentage of such Singaporeans with rare diseases which are covered by the Rare Disease Fund (RDF).

He also asked how the RDF moved from covering medicines used to treat the initial three rare diseases to the current five and whether the RDF can move from covering medicines to treat conditions to cover rare diseases instead.

Mr Ong noted that Singapore’s national healthcare financing schemes such as MediSave, MediShield Life and subsidies provide financial assistance for treatments of the majority of those with chronic rare diseases these group of patients.

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.

It was revealed in a separate parliamentary reply that MediFund provided a total of S$164.1 million in assistance through more than 1.2 million successful applications to support needy Singaporeans with their medical bills in the Financial Year (FY) 2021. This would suggest that each application got an average of S$136.75.

Mr Ong noted that the RDF was set up to support high-cost medications for this group.

He also shared that RDF has supported nine patients, which represents about 0.4% of Singaporeans with rare diseases, since its establishment in 2019.

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, said Mr Ong.

Mr Ong provided answers of the same tone in a written reply on 8 November to questions filed by WP MP for Aljunied GRC, Mr Leon Perera about the number of applications that the RDF received since April 2021 and if it has available funds to support new applicants at the current time.

“There remains the broader question as to whether the Government should support treatments regardless of their cost, particularly if the efficacy is uncertain,” said Minister of Health, Ong Ye Kung.

Further noting that this position taken by MOH on supporting treatments for rare diseases, needs to be carefully reviewed and must not be taken lightly.

It was revealed in October last year that RDF raised about S$137.9 million from both public donations and the Government’s 3:1 matching contributions as of 31 July 2022 since its inception in 2019. This includes S$37.9 million raised in FY2021, and S$8.6 million raised in FY22 as of 31 July 2022.

Mr Chua had asked a separate question about the number of Singaporeans newly diagnosed with rare diseases over the past ten years and the average life expectancy of such patients with rare diseases.

However, Mr Ong said in response that the Ministry of Health does not track the incident number of Singaporeans who are newly diagnosed with rare diseases or the life expectancy of patients with these diseases.

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