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A little girl is being denied a life-saving drug because of a bureaucratic loophole
May 27, 2015  |
Lucy Miller

Although it might seem like it could never happen in this country, a 12-year-old girl is being denied life-saving treatment because of a technical loophole – despite the drug that she needs being stored in the hospital where she’s being treated.


ThinkstockPhotos-134389167Abi Longfellow has a rare kidney disease, which could kill her within five years. However doctors have been barred from giving her the treatment that she needs because – whilst too rare to be covered by the NHS – her illness is not rare enough to merit the unlocking of extra cash that is reserved for exceptional cases.

The drug costs £1346,000 per year, meaning it’s also impossible for Abi’s parents to buy it privately.


This is despite the fact that when the license on the drug expires in 2020 there’s the potential for it to be bought as cheaply as paracetamol.


The drug – Eculizumab – has been created by pharmaceutical company Alexion.


Other children in Leeds General Infirmary, where Abi is being treated, are also being treated with Eculizumab whilst she is being denied it, because their kidney illnesses are more common.


Now Jo and Andy Longfellow have begun a campaign with the Sunday People – a British newspaper – in order to try and get their daughter the treatment that she needs.


The resulting petition, on change.org, has so far gained over 40,000 followers.


Abi has also written a letter directly to Prime Minister David Cameron, in which she questions why it is fair that “My lifesaving medicine is in my hospital yet I cannot use it to save my kidneys.”


She goes on to ask why she would get the treatment if she lived in “Ireland, Europe, America, Canada, etc” but is denied it here.


The change.org petition can be viewed here.

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