Parliament: MOH studying option of separate fund for children with rare diseases

Straits Times correspondent Amelia Teng, 29, with her one-year-old son Christopher and husband, Geoffrey Toi, 33. The cheapest option of the lifelong medication needed for Christopher costs $5,000 a month and the drug has to be procured from Australi
Straits Times correspondent Amelia Teng, 29, with her one-year-old son Christopher and husband, Geoffrey Toi, 33. The cheapest option of the lifelong medication needed for Christopher costs $5,000 a month and the drug has to be procured from Australia.ST PHOTO: KUA CHEE SIONG

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

He told Parliament on Monday (Jan 8) 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, to encourage different stakeholders in society to chip in and help these families, and help these patients," 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.

MOH will come up with a proposal later this year after studying the different options carefully, he said.

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 rely on expensive medication to lead normal lives, or in some cases, to stay alive.

The medication can cost as much as $10,000 a week, and dosages will increase with age - further driving up costs.

Private insurance companies 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 commercially viable case to support such patients.

"The affected children may be few. The affected families may be small in number. But we should not leave behind any Singaporean," he said.

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 son Christopher, one, who was born with a very rare condition called bile acid synthesis disorder, which affects five out of a million children.

 
 

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".

Mr Kenneth Mah, who is the co-founder of the Rare Disorders Society Singapore and has a daughter with a rare ailment, said: "A separate fund would be ideal, as we know that rare diseases affect relatively few families, but treatment could be ultra-expensive for them."

"But what we hope for is a multi-agency approach, as families might need emotional and financial planning support, not just financial assistance. When the children grow up, they might also have different educational needs," he added.