Adequacy of Rare Disease Fund in Supporting Applicants

Mr Leon Perera asked the Minister for Health (a) how many applications has the Rare Disease Fund (RDF) received since April 2021; (b) what is the RDF's ratio of applicants to grants; and (c) whether the RDF has available funds to support new applicants at the current time.

The Rare Disease Fund (RDF) operates as an endowed fund to ensure that beneficiaries can be supported for life, as rare disease patients generally require high-cost medicines on a lifelong basis. The RDF Committee which oversees the fund adopts a 'listing' approach, which means that a medicine can only be listed for support after it assesses that the medicine is able to meaningfully extend life expectancy and improve patient's quality of life.

Currently, the RDF has listed seven medicines for five conditions. The support is reviewed annually for each beneficiary, to factor in changes in their clinical condition and financial situation. Since April 2021, the RDF has received applications from six patients, all of whom are currently supported by the fund. There are sufficient funds to support these patients.

We recognise that there are other rare disease patients requiring non-listed medications, which the RDF currently does not support. Medicines for rare disease patients can exceed $200,000 per patient annually, with varying efficacies, and our healthcare financing system is not designed to support such high-cost treatments. Instead, society and the Government collectively support the financial needs of Singapore citizens with rare diseases through the RDF, with the Government providing $3 of matching grant for every dollar of donation. We have also seen how some patients are able to obtain support from the community through crowdsourcing or other charity funds, which is heartening.

There remains the broader question as to whether the Government should support treatments regardless of their cost, particularly if the efficacy is uncertain. This is a position that needs to be carefully reviewed and must not be taken lightly. For now, we will continue to monitor the situation and work towards expanding the scope of RDF treatments that can be supported. We also encourage members of the public to support the RDF with donations so that more medicines and conditions can be listed, and more patients can be supported.