MOH looking at fund for children with rare diseases

A separate fund for children with rare diseases that are very expensive to treat could be set up in the future, said Senior Minister of State for Health Chee Hong Tat.

Mr Chee told Parliament yesterday the fund is one of several options that the Ministry of Health (MOH) is studying, as it reviews how to better support children with such diseases and their families.

Contributions to the fund can be made partly by the Government but also by companies, charities, community groups and individual donors, he said.

Mr Chee said MOH is also studying how insurance and discretionary funds, such as Medifund and the Medication Assistance Fund, can help reduce the out-of-pocket expenses for these children and their families.

The ministry will come up with a proposal later this year after studying the different options.

Mr Chee was responding to Dr Tan Wu Meng (Jurong GRC), who filed a motion to speak on extending more support to children with rare diseases. Dr Tan highlighted the heavy financial burden on families caring for such children, who depend on expensive medication that can cost as much as $10,000 a week.

Dosages will increase with age, which further drives up costs.

Private insurers limit or even deny coverage for such pre-existing conditions, Dr Tan noted.

He said the Government could step in where the free market is inadequate, or where no private-sector player can find a compelling commercial case to support such patients. Patient advocacy group Rainbow Across Borders estimates that there are 2,000 to 3,000 rare disease patients in Singapore.

Children born with rare genetic diseases have inherited two copies of a flawed gene.

Last month, The Straits Times correspondent Amelia Teng shared her experience caring for her one-year-old son Christopher, who was born with a very rare condition called bile acid synthesis disorder.

He needs to take cholic acid for life, which costs $5,000 a month, even with parallel imports.

Responding to this case, Mr Chee said KK Women's and Children's Hospital (KKH) - which is caring for Christopher - is working with the drug manufacturer to try to bring down costs for the family.

"I've also asked my colleagues in MOH and KKH to assist Christopher's family and find a way to help them to reduce their out-of-pocket expenses," he said.

Citing inclusive policies like MediShield Life, Dr Tan said the Government has clearly moved to help those who have previously fallen through the cracks.

"But no policy is perfect. And when a condition is unusual, like a rare disease, it sometimes does not fit easily into existing policies," he said. He called giving more support to children with rare diseases a "common-sense move".

A version of this article appeared in the print edition of The Straits Times on January 09, 2018, with the headline 'MOH looking at fund for children with rare diseases'. Print Edition | Subscribe