Singapore

Singaporeans with 3 rare diseases will get funding help for treatment

Singaporeans with three forms of rare diseases will now have access to financial aid to help with their medical expenses, which can run into thousands of dollars each month.

Launched yesterday by the Ministry of Health (MOH) and SingHealth Fund, the Rare Disease Fund (RDF) will, for a start, support the use of five medicines to treat the three conditions - Primary bile acid synthesis disorder, Gaucher disease and hyperphenylalaninaemia due to tetrahydrobiopterin (BH4) deficiency.

The hope is that over time, more rare diseases and medications will be added to the list, an MOH statement said yesterday .

Rare diseases are defined by MOH as conditions that affect fewer than one in 2,000 people, and mostly are genetic and often surface during childhood. In some cases, effective treatments are available and the medicines can substantially increase patients' life expectancies and improve quality of life.

However, MOH noted that these medicines can be very costly, going up to hundreds of thousands of dollars a year, and patients will often need to take them for the rest of their lives.

"For many families it is a strain, and for some, it is completely out of reach," said Mr Edwin Tong, Senior Minister of State for Health and Law, at the launch.

He said the RDF would extend "much needed help" to those with rare diseases and improve their access to life-saving medicines.

The RDF, which supports patients whose treatment costs remain unaffordable even after government subsidies, insurance payouts and financial assistance such as Medication Assistance Fund and MediFund, currently stands at $70 million with the government matching community donations by three to one. In addition, the Government is funding all operational expenses of managing the fund, ensuring that all donations received will be used solely for supporting patients.

"By providing three-to-one donation matching, we hope that the larger community including philanthropists, companies, community groups and individuals, will come together to jointly support these patients and their families as part of our caring and inclusive society," Mr Tong said.

As of yesterday, the RDF has approved two applications for support.

More information on the RDF is available on www.kkh.com.sg/rarediseasefund

MEDICAL & HEALTH