Duchenne Muscular Dystrophy drug campaign

A new drug is giving hope to boys in Europe with Duchenne Muscular Dystrophy, but it's not yet been made available on the NHS in the UK. A petition to change that has been signed by thousands of people.

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9-year-old campaigner makes personal plea to the Prime Minister

A nine-year-old boy with a rare muscle wasting disease has made a personal plea to the Prime Minister to make the drug he needs available on the NHS.

Archie Hill handed in a petition at Number 10.

He was joined in Downing Street by families from across the South who have youngsters suffering from the same condition. Phil Hornby reports:

Campaigners to hand in petition to Prime Minister

Nine year-old Archie Hill, of Gerrards Cross, Buckinghamshire, who has muscular dystrophy is handing in his personal plea to Prime Minister David Cameron to help him.

A petition of 22,000 signatures will be presented at 10 Downing Street by families waiting for access to Translarna, the first ever drug tackling the causes of Duchenne muscular dystrophy.

In a statement NHS England says:“Patient groups have asked the NHS to consult with the public about priorities for new services and treatments to be funded from April, and that consultation begins next week.

"Meanwhile patients whose doctors say they have an urgent need for a new treatment can ask medical experts to fast track their case.”


NHS England 'considering' how it makes decisions about drugs like Translarna

A petition signed by more than 23,000 people is to be presented to David Cameron, urging him to get the drug Translarna approved for boys who have a certain kind of Duchenne Muscular Dystrophy.

The drug was approved in Europe in August.

Families of children with the condition claim they are being left to suffer due to NHS administrative delays.

We are considering how we make decisions about specialised services treatments, such as Translarna, and how these decisions will be prioritised.

The NHS England Board decided that the consultation on prioritisation for specialised services should be 90 days, and a response cannot be given consideration until this 90 days has passed.

Meanwhile any prioritisation which is urgent on clinical grounds will be dealt with quickly though our existing procedures.

It is important to remember that this process is looking at services we would routinely commission for groups of patients and the route of individual funding requests remains the same.

– NHS England

Calls for Duchenne Muscular Dystrophy drug to be made available on the NHS

Families in the ITV Meridian region are calling for the government to make available a new drug which they say will help save their children's lives.

Luca Fernandes is one of the young people who has Duchenne Muscular Dystrophy - a progressive muscle-wasting condition for which there is no cure.

However a new drug is giving hope to boys in Europe, and thousands have signed a petition for it to be made available on the NHS. Kerry Swain reports:

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