A UK baby with a fatal muscle condition has received Zolgensma, a new gene therapy which is said to be the “most expensive drug in the world”.
The eleven-month-old baby from Colchester, identified as
Edward, has severe spinal muscular atrophy (SMA) — which means he lacked a
protein vital for his muscle development.
SMA is a genetic disease affecting the central nervous
system, peripheral nervous system, and voluntary muscle movement (skeletal
muscle).
According to BBC, Edward received the new gene therapy Zolgensma, which costs £1.79m, at Sheffield Children’s Hospital in England.
Zolgensma is thought to be the most expensive drug, although
NHS England was said to have negotiated an undisclosed discount on its £1.79m
list price.
Speaking on the baby’s reception of the drug, which contains
a replica of the missing gene SMN1, Megan Willis, Edward’s mother, said she was
so relieved and thankful.
Willis was quoted as saying it was “so stressful knowing
there was a wonder drug out there” but they could not get hold of it.
She said they had tried to raise the money privately and had
started to organise a protest before it was granted.
It is understood that babies born with type 1 SMA, which is
the most common form, experience progressive muscle weakness, loss of movement,
difficulty breathing, and have a life expectancy of two years.
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