3.4 Billion Won ‘Miracle Injection’: British 5-Year-Old Walks Four Years After Treatment

According to Financial News, Edward Willis-Hall, a five-year-old boy in the UK who suffered from the rare genetic disorder SMA, was able to walk for the first time in four years after receiving gene therapy.
On the 31st of last month, the British Broadcasting Corporation (BBC) reported that Edward has now regained enough health to not only walk on his own but also swim.
Edward was diagnosed with SMA at about two months old. SMA is a genetic disorder in which damage to the anterior horn cells of the spinal cord blocks muscle movement signals, leading to muscle degeneration. It typically develops in infants and young children, and type 1 is particularly severe, with an average life expectancy of just two years. The NHS estimates that 60 to 80 new cases are diagnosed in the UK each year.
At five months old, Edward received Zolgensma, developed by Swiss pharmaceutical company Novartis, with support from the NHS. Zolgensma replaces the missing SMN1 gene to help the body produce essential proteins. The cost of a single dose is 1.79 million pounds (about 3.4 billion won), but it can be administered as a one-time intravenous injection. In 2021, the NHS approved this drug for free medical coverage.
Edward’s condition improved rapidly after the treatment. After hip surgery last October, he recently became able to take 20 to 30 steps on his own. Unlike most children with muscle loss who struggle to float in water, he is now able to swim. The BBC reported that Edward has started elementary school and is making friends.
When Edward was treated in 2021, Zolgensma was the world’s most expensive medicine. However, even pricier drugs have since emerged. The hemophilia treatment Roctavian costs about $2.9 million (about 4.1 billion won) per dose, while Elevidys, a treatment for Duchenne muscular dystrophy, is priced at around $3.2 million (about 4.6 billion won).
hsg@fnnews.com Han Seung-gon Reporter