TAIPEI (TVBS News) — In a move to expand the scope of medical coverage for the rare disease Spinal Muscular Atrophy (SMA), the National Health Insurance (NHI) Administration stated on Thursday (Feb. 15) that new applications have been approved for SMA treatment coverage.
The announcement came after lawyer Chen Chun-han, a prominent advocate for wider SMA medication coverage, passed away due to a lung infection during the Lunar New Year Festival at the age of 40.
Chun-han's commitment to this cause and his personal struggle with the SMA disease have amplified the conversation about SMA treatment. SMA, a progressive neuro-muscular degenerative disease caused by a mutation in the SMN1 gene, affects muscle functionality which impacts activities such as sitting, walking, speaking, breathing, and eating. Its most significant threat is respiratory failure, which could lead to pneumonia or septic shock due to muscle weakness or impaired coughing.
In an announcement by Medical Review and Pharmaceutical Benefits Division head Huang Yu-wen, she detailed there are three pioneering SMA treatment drugs, administered through injection, gene therapy, and orally. Among them, the gene therapy drug Zolgensma comes with a hefty price tag of NT＄49 million. Since the second half of 2023, Zolgensma has been included in the NHI benefits, with only one infant having used it so far. The patient's condition is now stable.
Huang explained that the benefits criteria for the injection and oral medication are similar. If a patient has lost motor function, the effect of the medication may not be as apparent. Therefore, a patient must meet an upper limb motor function index (RULM) score of at least 15. There are over 400 SMA patients in Taiwan. By the end of 2023, 158 people applied for medication, of which 145 were approved.
The NHI Administration expects to hold an expert meeting in March to discuss the recent applications by pharmaceutical companies aiming to expand access to the drugs for all SMA patients. It anticipates approval could be made in the first half of 2024.