Newspaper article The Journal (Newcastle, England)

Mum Fears Ill Son Could Lose Life-Enhancing Drug

Newspaper article The Journal (Newcastle, England)

Mum Fears Ill Son Could Lose Life-Enhancing Drug

Article excerpt

Byline: Mike Kelly Reporter mike.kelly@ncjmedia.co.uk

FUNDING could be withdrawn for the first drug to target a little lad's life-limiting, muscle-wasting condition.

Lilian and George Pegg have spoken of their fears ahead of a meeting on Tuesday to review whether Duchenne muscular dystrophy drug, Translarna, should be funded on the NHS.

At the age of three, their son, also called George, now 11, was diagnosed with the condition, which causes muscles to weaken and waste, including the heart and vital breathing muscles. He has been taking Translarna as part of a clinical trial.

The couple will hear before Christmas whether the drug will be made available through the NHS for George and 50 other children in England.

Last month, they were told that the National Institute for Health and Care Excellence (NICE) would not recommend NHS access to Translarna, without more justification of its cost and evidence of its impact.Children must still be walking to be eligible for Translarna and, with most needing a wheelchair before the age of 12, there are fears delays will mean some children miss out entirely.

The Pegg family has been campaigning alongside Muscular Dystrophy UK to speed up a decision on NHS funding for the drug, with George delivering a letter to 10 Downing Street asking for the Prime Minister's help.

Lillian, of Blyth, said: "Translarna has had an enormous impact on George's quality of life.

"He began taking it as part of a clinical trial just 18 months after he was diagnosed.

"He suddenly had more energy and learned to run, jump and hop for the first time, all things you usually take for granted in a five-year-old.

"Today, George is still doing amazingly well. He turns 12 in a couple of weeks, and is still walking, and looks to be doing so for a good while yet. …

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