Rare Disease Fund established for Singaporeans with rare illnesses
SINGAPORE — The Ministry of Health (MOH) and the SingHealth Fund announced on Tuesday (2 July) a new charity fund to support Singaporeans with specific rare diseases which require costly treatment.
The Rare Disease Fund (RDF) will help support patients whose treatment costs remain unaffordable even after government subsidies, insurance and financial assistance have been provided, said MOH in a press release.
Apart from donations from the community and the public, the fund will see the government matching $3 for every $1 donated. All donations to the fund will be eligible for a 250 per cent tax deduction.
A total of $70 million has been raised for the fund, of which $18 million was given by founding donors and partners, including Far East Organization, National University Health System and Tote Board.
The MOH added that all operational expenses of managing the fund will be borne by the government.
“This ensures that all donations received will be used solely for supporting patients,” said the ministry.
A seven-member committee will assess patient applications for financial support from the fund, and provide stewardship over the governance of the fund.
It will also decide on the list of medicines to be covered under the fund, taking into account advice by an expert panel of senior clinical specialists with experience in rare disease management, said the ministry.
The MOH added, “As more funds are raised, the RDF can be expanded to cover more medicines for other rare conditions.”
An initial list of five life-saving medicines which treat three rare diseases has been approved under the fund.
These are cholic acid for primary bile acid synthesis disorder; Imiglucerase (Cerezyme), Velaglucerase alfa (VPRIV), Taliglucerase alfa (Elelyso) for Gaucher disease (Type 1 or 3) and Sapropterin dihydrochloride (Kuvan) for Hyperphenylalaninaemia due to tetrahydrobiopterin (BH4) deficiency.
Applications for financial assistance from the fund have commenced for patients with these three conditions, to be considered by the committee on a case-by-case basis. Patients undergoing treatment at public healthcare institutions for these rare diseases can apply through medical social workers.
To date, applications from two patients have been evaluated and approved by the committee.
Six people with the three rare diseases supported under the fund are currently on treatment in Singapore, said the MOH in response to media queries.
“The remaining (four) individuals are receiving support through other government financial schemes or are covered by insurance for their treatment costs and are able to afford their medicines,” it added.
According to the ministry, rare diseases are conditions that affect fewer than one in 2,000 people.
They are often diagnosed during childhood and genetic in origin. Many of these diseases do not have available treatments and patients often have shorter lifespans as a result.
However, for those where effective treatments are available, medicines can cost up to hundreds of thousands of dollars a year with patients often required to take them throughout their lives, said the ministry.
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