Defiant family's march urging funding for life-prolonging treatment

A HAMPSHIRE family will be pounding the streets of London today in a bid to urge health chiefs to fund a life-prolonging treatment for their little boy.

Time is running out for seven-year-old Jagger Curtis who suffers from Duchenne muscular dystrophy which means he is unlikely to live beyond his 20s.

However, his family were given hope that a new drug on the market could help prolong his life and improve the quality of it. Jaggers mum Jules Geary was hoping that her son would by now be on the drug Translarna after Jagger was chosen as one of only four boys in Southampton who suffers from the particular type of muscle wasting disease that the drug could help.

But last month she discovered that funding for the drug had not been approved by NHS England - the body which approves and pays for drugs to be prescribed on the National Health Service.

Jules, 39, from Romsey said: We couldnt believe it. For the drug to work Jagger still needs to be mobile, which he is now but that is likely to change by the time he reaches eight or nine. We simply dont have time to wait, this is a ticking time bomb for us.

Today Jules, her partner and Jaggers dad, James Curtis, 42 and Jules dad and his partner will be heading to London to join a mass rally and march through the capital before handing in a petition to Downing Street.

They are calling on NHS England to fully fund the drug which is the first time a treatment has come on the market on the particular type of the condition that only 15 percent of the 3,500 Duchenne muscular dystrophy patients nation-wide suffer from.

Jules added: We have been lobbying MPs and putting pressure on the government to look at this situation. This would mean a real difference to the quality of life for our son, there is no other treatment out there, this is his chance at a longer and better life.

Robert Meadowcroft, Chief Executive of the Muscular Dystrophy Campaign: Translarna is a long-awaited breakthrough. We must see an end to the delays in this drug reaching children who desperately need it. NHS administrative delays cannot lead to a situation in which even one child becomes ineligible for a drug that could have made a profound difference to their life. We and families affected by Duchenne muscular dystrophy will be demanding action on Wednesday, for the many children who cannot afford to wait.

A spokesman for NHS England said: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. 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.

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Defiant family's march urging funding for life-prolonging treatment