Applications for Rare Disease Fund

Mr Leon Perera asked the Minister for Health (a) to date, of the number of applications to the Rare Disease Fund, how many have been successful and how many have been unsuccessful; (b) what avenues of public consultation and engagement the Government is seeking with respect to helping Singaporeans with rare diseases; and (c) whether the Government will consider setting up a Rare Disease Registry to provide publicly available data on the prevalence of rare diseases in Singapore and the burden of cost it imposes on patients.

Often diagnosed in childhood, most rare diseases are genetic in origin. Many rare diseases do not have treatment available and patients 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.

In 2019, the Rare Disease Fund (RDF) was established to support Singapore Citizens suffering from rare genetic diseases where medication is very costly and required for life. The fund is sustained through a combination of society’s contributions and the Government’s 3:1 co-matching of funds raised. Medications can be considered for coverage when there is clear evidence that they are clinically effective. When there are sufficient funds to generate the income needed to fund the pay-outs to the beneficiaries, more medications can be added to RDF’s support list, and more patients can be assisted.

Singaporeans undergoing treatment at public healthcare institutions can apply for assistance through medical social workers for medicines that are covered by the RDF’s support. Each RDF application is carefully assessed by an independent RDF Committee comprising members with diverse backgrounds from the community sector, private corporations, and healthcare. They consider various factors such as whether the patient is clinically eligible and therefore likely to benefit from the treatment, the family’s ability to afford the treatment either in part or in whole, as well as any extenuating circumstances faced by the patient and family. Beneficiaries are also expected to make a co-payment commensurate with the family’s means. To date, the RDF committee has received applications from eight patients and only one application was not supported as the cost of treatment was assessed to be within the family’s means.

Groups like the Rare Disorders Society (Singapore) (RDSS) and Rainbow Across Borders (RAB) have been helpful in raising awareness and providing support to patients with rare diseases. The RDSS and the RDF have collaborated in raising awareness about rare diseases as well as in fundraising.

As our population is small, the number of patients with rare diseases is correspondingly lower than most countries. Our public healthcare institutions diagnose or treat most patients with rare diseases and are therefore able to monitor the prevalence, condition, and support provided to the patients. Due to patient confidentiality and the number of patients is small, this information is not published.

Nevertheless, it continues to be important that public awareness for rare diseases is raised, and the Government will continue to do so through the RDF and with interest groups like the RDSS and RAB. As the RDF can only support patients according to the funds it has available, we encourage Singaporeans to take an interest and contribute generously to supporting those in need.