Can Zolgensma treatment for rare diseases be subsidised by the Health Ministry?

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Health Ministry Assistance for Rare Disease Treatment with Zolgensma Under Consideration

Former prime minister Datuk Seri Ismail Sabri Yaakob is formally requesting the Ministry of Health to consider subsidising the treatment for baby Sufi Syafrina, who requires the expensive Zolgensma gene therapy. This request is being made through an official letter to the Minister of Health, Dr Zaliha Mustafa, specifically referencing the allocation for rare disease treatments. The aim is to explore potential government assistance for Sufi Syafrina's medical needs, which are substantial.
Formal Request for Zolgensma Treatment Assistance

Datuk Seri Ismail Sabri Yaakob has indicated his intention to submit a formal letter to the Minister of Health regarding baby Sufi Syafrina's critical condition. The letter will specifically highlight the need for Zolgensma, a gene therapy that comes with a significant price tag of RM9 million. The former prime minister hopes to secure aid from the government's budget designated for the treatment of rare diseases.
Current Treatment and Fundraising Efforts

Sufi Syafrina is diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a severe neuromuscular disorder. To date, approximately RM60,000 has been raised through public donations. This collected amount has been directed towards purchasing Risdiplam, an oral medication for SMA, alongside covering costs for physiotherapy and other necessary medical expenses.
Cost of Alternative SMA Medication

The oral medication, Risdiplam, which is currently being administered to Sufi Syafrina, is also costly. A 60ml bottle of Risdiplam is priced at RM40,000. This highlights the substantial financial burden associated with managing SMA, even with alternative treatments to the more expensive Zolgensma gene therapy.

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Can Zolgensma treatment for rare diseases be subsidised by the Health Ministry?

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