The National Health Insurance Administration (NHIA) yesterday confirmed that it has approved an application to cover a one-time NT$49 million (US$1.53 million) gene therapy treatment for spinal muscular atrophy (SMA) in a child younger than six months old.
The infant is the first to receive the gene therapy for SMA since it was added to National Health Insurance (NHI) coverage this month. It is also the highest NHI payment for a single treatment.
SMA is a progressive, rare genetic condition that causes muscles throughout the body to become increasingly weaker, leading to problems with movement.
Photo: CNA
The gene therapy for SMA — onasemnogene abeparvovec, marketed under the brand name Zolgensma — is a one-time intravenous infusion to deliver a functional copy of the human survival motor neuron gene to motor neuron cells. It is expected to improve muscle function, movement and the survival rate of children with the disease.
NHIA Deputy Director-General Tsai Shu-ling (蔡淑鈴) said that the recipient of the treatment, who lives in southern Taiwan, meets the NHI’s requirement that the patient be younger than six months old to receive Zolgensma, as studies have shown that infants in that age group have the most promising outcomes from the gene therapy.
As the cost of Zolgensma is high, applicants must undergo a review and obtain approval for coverage, and the review for this case was completed on Aug. 8, she said.
Zolgensma is expected to help about eight infants with SMA each year, she added.
Tsai said that once the hospital has finished preparations and received the drug, the child would receive the treatment, and although its effect is expected to last a lifetime, the child would still need long-term follow-up care for at least 10 years.
So far, no other patients have applied for the treatment, but hospitals are to help eligible recipients gather the required information for an application after seeing their case, she said, adding that there are also oral drugs and intrathecal injections for treating SMA.
Additional reporting by CNA
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