Two sailors want to put their own record 'out of sight'.
Life Saving Drug Too Expensive
A drug that could save the life of a Devon teenager with cystic fibrosis isn't being made available on the NHS due to it's cost.
And now her mum Denise Murphy has started a petition to have the issue debated in parliament - but 100 thousand signatures are needed in the next few months.
14 year old Katie Murphy lives in Exeter and took part in a medical trial for the new drug, Kalydeco, at the Royal Brompton Hotel last year.
Katie saw her lung function improve almost imediately by more than 10 per cent and she started to gain weight - something which normally proves difficult for cystic fibrosis sufferers.
But despite the positive results the drug isn't being made available through our NHS.
Mum Denise says at the moment for youngsters like her daughter, their only hope is to have a lung transplant but the drug could solve all that by simply taking two tablets a day.
Kalydeco works by targetting the underlying cause of cystic fibrosis - a faulty gene and its protein product CFTR.
Currently the new drug effectively 'cures' Cystic Fibrosis sufferers wth a specific G551D mutation, of which there are 5 known cases in Devon alone and around 360 across England.
Speaking to Heart Denise Murphy says it's a revolution in medicine which shouldn't be swept under the carpet just because of it's price tag
To sign the petition click on http://epetitions.direct.gov.uk/petitions/34753
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