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Multi-agency approach needed to help kids with rare diseases

The recent Sunday Times spotlight on the plight of Singaporeans afflicted with rare diseases (Rare diseases, pricey drugs: Nine-year-old's treatment costs $24k a month; Dec 17) provides a sobering picture of reality - despite our economic prowess, gaps remain in the social support system for this vulnerable group.

Life for children with rare diseases and their families is fraught with uncertainty.

These families must not be left to fight their battles alone just because a child with a rare disease is born into their homes.

While subsidies are available to help some with the high cost of treatment, under the current means-testing framework, middle-income families may not qualify for them.

Middle-income families too are unlikely to have the financial means to pay for the drugs, as such drugs are not only expensive but patients often also need to be on them for their whole life.

Drug treatment and medical care are just two facets of the enormous financial and emotional burden faced by such families.

Children and families affected by rare diseases have special non-medical needs too, such as in education, employment, mobility and social inclusiveness. These challenges cannot be solved by the Health Ministry alone.

A multi-agency approach is needed to coordinate the medical and non-medical needs of these children and families in order to deliver holistic and sustainable care, and comprehensive social support over a lifetime.

Leaving no one behind is an oft-mentioned mantra in Singapore.

To be truly inclusive and leave no one behind is to embrace all the children with rare diseases and their families.

Let's put our hearts and minds together to show fellow Singaporeans that their diseases may be rare, but love is not.

Li Ze Zong

A version of this article appeared in the print edition of The Sunday Times on December 31, 2017, with the headline 'Multi-agency approach needed to help kids with rare diseases'. Print Edition | Subscribe