New fund helps patients with rare diseases cope with medical expenses

Senior Minister of State for Health Edwin Tong with Svea Nadia Hertzman, eight, at the children's ward of KK Women's and Children's Hospital (KKH) yesterday. He was accompanied by KKH chief executive Alex Sia.
Senior Minister of State for Health Edwin Tong with Svea Nadia Hertzman, eight, at the children's ward of KK Women's and Children's Hospital (KKH) yesterday. He was accompanied by KKH chief executive Alex Sia.ST PHOTO: GIN TAY

Singaporeans with three forms of rare diseases 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, fund five medications used to treat three conditions - primary bile acid synthesis disorder, Gaucher disease and hyperphenylalaninaemia due to tetrahydrobiopterin 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 the ministry as conditions that affect fewer than one in 2,000 people, and are mostly genetic and often surface during childhood.

In some cases, effective treatments are available and these can substantially increase patients' life expectancy and improve their quality of life.

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

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

He added that the RDF would extend much needed help to those with rare diseases and improve their access to life-saving medicine.

 
 

The RDF, which supports patients whose treatment costs remain unaffordable even after government subsidies, insurance payouts and financial assistance such as the 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.

One of them, hotel guest services supervisor Chew Tuck Choy, 39, has an 11-year-old daughter, Zecia, who suffers from Gaucher disease.

It causes a build-up of fatty substances in various organs leading to severe bloating, and affects only a handful of children in Singapore.

Zecia needs fortnightly enzyme replacement therapy for life. This costs more than $24,000 a month. Last year, the family began receiving insurance payouts for her treatment. Together with money from Mr Chew's Medisave and, now, support from the RDF, the family does not need to fork out cash for the medication.

Asked how he felt upon receiving word that he would receive support from the RDF, Mr Chew said: "Delighted! No words can describe it!"

• For more information on the RDF, go to www.kkh.com.sg/rarediseasefund

A version of this article appeared in the print edition of The Straits Times on July 03, 2019, with the headline 'New fund helps patients with rare diseases cope with medical expenses'. Print Edition | Subscribe