Wonder drug 'lottery' is 'torture' for families

SOME YOUNG PATIENTS WITH MUSCLE WASTING ILLNESS MISSING OUT

- NICK HORNER News Reporter

CHILDREN with a life-limiting condition face a “cruel lottery” over a new drug - despite being treated at Birmingham hospitals just four miles apart.

Young patients at Birmingham Children’s Hospital are set to be given early access to medication which could slow the progression of Duchenne muscular dystrophy (DMD) - but those at Heartlands will not.

A charity dedicated to the condition, which causes progressive muscle loss and has an average life expectancy of just 29, has called the anomaly an “injustice”.

University Hospitals Birmingham NHS Foundation Trust, which runs Heartlands, confirmed it was not part of an early access programme which saw Givinostat made available to some patients elsewhere.

Rosemary Reid, whose 11-year-old son Harry has DMD and is under Heartlands’ care, said: “I always thought telling my son he would have a limited life and would lose the ability to walk would be the hardest thing I would have to do as a parent.

“I was wrong. It was trying to explain to an 11-year-old there was a new medicine he can’t have due to cost.”

Rosemary, from Corby, in Northamptonshire, added: “The essence of the NHS was to end inequality so all were entitled to the same treatments.

“I don’t understand how any trust can take away from a child the ability to walk for longer or live for longer, it is beyond cruel.”