Commentary: Singapore cannot rely only on crowdfunding to help those with rare diseases

Commentary: Singapore cannot rely only on crowdfunding to help those with rare diseases

On what to fund, the Ministry of Health’s Agency for Care Effectiveness has an established process for assessing cost-effectiveness, which should be the basis upon which the model for rare disease treatments is adapted.

On how much to fund, Singapore must find its own way between hard-headed pragmatism – finite funds mean that millions of dollars used to treat one patient are millions not available for other health programmes – and compassion.

Beyond aggressively seeking pricing discounts from manufacturers, one proposed approach is to have staggered payment arrangements, combined with “value-based contracting” where the price of the drug is tied to how well it performs.

This approach shares the risk, as the long-term effects and side effects of these therapies are still unknown. It helps to avoid wasting taxpayers’ money for therapies that may ultimately prove ineffective.

Singapore would be well-placed to pilot such value-based contracting given our trusted standing with pharmaceutical companies, our medical sophistication and ease of long-term patient follow up. Singapore could take reference from the American experience with Luxturna, in which a rebate programme is offered to payers (such as insurance companies), based on the drug’s effectiveness which is assessed at 30 to 90 days, and again at 30 months.


These heart-wrenching decisions on healthcare coverage are not just about financials, they are also about nation-building.

As Deputy Prime Minister Lawrence Wong assured Singaporeans at the May Day Rally: “However treacherous the terrains ahead, so long as Singapore continues to progress, all Singaporeans must continue to progress – with none among us left behind”.

Innovative ways for health systems to finance and deliver these new therapeutic modalities are needed as more high-priced therapies become available in the coming years.

It cannot be that only wealthy patients deserve life or that desperate parents cling on to the life of their children by the thin thread of public charity. 

Dr Ng Qin Xiang is currently working towards becoming a Preventive Medicine specialist and pursuing a PhD at the NUS Saw Swee Hock School of Public Health. Dr Chan Hwei Wuen is a Consultant, Department of Ophthalmology and leads a dedicated Inherited Retinal Diseases service at the National University Hospital. Associate Professor Jeremy Lim is director of the Leadership Institute for Global Health Transformation at the NUS Saw Swee Hock School of Public Health.