9 Singaporean patients helped by Rare Disease Fund since 2019

Singapore — Just nine Singaporeans – or about 0.4 per cent of the 2,000 to 3,000 who have chronic rare diseases here – have received help from the Rare Disease Fund (RDF) since it was started in 2019.

Most patients with rare diseases are able to get financial help from schemes such as MediSave and MediShield Life and subsidies, said Minister for Health Ong Ye Kung. Patients who struggle to pay their bills can also apply for MediFund through the public health institutions.

A small percentage of patients may need additional financial assistance, and the RDF was set up to support high-cost medications for this group, Mr Ong added.

“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.”

Mr Ong provided the update in a parliamentary reply on March 22 in response to questions about the fund and its beneficiaries from Workers’ Party MP Louis Chua (Sengkang GRC).

The charity fund currently covers seven medications for five conditions.

It is managed by the KK Women’s and Children’s Hospital Health Fund, and relies on donations, which are matched three for one by the Government. Donors get a tax deduction of 2.5 times the donated amount.

Separately, Mr Chua had also asked how many Singaporeans have been diagnosed with spinal muscular atrophy (SMA) and the cost of its treatment.

The Straits Times reported in February about crowdfunding efforts for 19-month-old Shamel Adrian Pilapitiya, who suffers from the rare genetic disorder that is not covered by the RDF. The condition results in muscle weakening, leaving the infant unable to sit up on his own.

Shamel’s parents are trying to raise $3 million for a one-time gene therapy, Zolgensma, which has to be administered before their son turns two.

The treatment is available in Singapore only via the Special Access Route, which allows for unregistered life-saving drugs to be imported into the country.

In his reply, Mr Ong said that there are currently about 40 to 50 people in Singapore diagnosed with SMA.

Risdiplam, sold under the brand name Evrysdi, is the only treatment option registered with and approved by the Health Sciences Authority. Patients require a daily dose for life, and it costs about $375,000 a year in public healthcare institutions.

“RDF will continue to raise more donations and explore the coverage of more rare disease conditions,” said Mr Ong.

He added that the fund 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.

In an Instagram post on March 28 citing Shamel and other patients, Mr Chua said he could only imagine the pain and helplessness of watching a loved one’s health deteriorate due to the inability to afford medical treatment.

He added: “I do hope that a ‘high-income’, developed nation such as ours can work towards supporting patients diagnosed with such diseases, and not have to rely on crowdfunding as the only viable financing model.”

Baby Shamel’s parents have 50 days left to raise the remaining $1.2 million for their son, having accumulated about $1.8 million.

To donate to Shamel’s cause, go to https://rayofhope.sg/campaign/baby-shamel