-
Ng Qin Xiang
and
Clarence Ong
This case study focuses on the financial challenges and policy implications of treating rare diseases in Singapore, using the story of Devdan, a 22-month-old living with spinal muscular atrophy (SMA). A promising novel treatment for SMA, Zolgensma®, is approved for use in Singapore but priced at S$2.9 million, which is out of reach for most. With few financing options, families often have to turn to community crowdfunding. Singapore’s Rare Disease Fund (RDF), established in 2019, whilst matching government contributions and public donations, offers limited coverage for patients and families. A comparative analysis with Australia, the United Kingdom, the United States, and South Korea reveals different approaches to funding rare diseases.
These include government-supported reimbursements, specialized funds like Australia’s Life Saving Drugs Program (LSDP) and the UK’s Innovative Medicines Fund (IMF), and private insurance models in the US. Leveraging on existing infrastructure and biomedical expertise, Singapore could establish risk-sharing agreements with pharmaceutical companies and contemplate the creation of a rare disease investment fund, which blends private investment and government support. Devdan’s case led to a very successful crowdfunding campaign, highlighting the power of community support. However, it also underscores the need for more sustainable and inclusive solutions for rare diseases locally.
Distinguished Prize 2023Link to PDF:
https://scholarbank.nus.edu.sg/handle/10635/247709