Oct 29, 2012 3:05 PM GMT
A 29-year-old woman will die without a new drug that the NHS is refusing to provide despite the manufacturer offering it to her for free, it emerged today.
Caroline Cassin, 29, who suffers from Cystic Fibrosis (CF) has been offered a new drug free of charge for a limited period by the makers but her NHS hospital is refusing.
Her family say she will die soon without it, yet managers at Heartlands Hospital in Birmingham say it would be unethical to provide the drug under the deal, only for it to be withdrawn later.
The drug, Kalydeco also known as ivacaftor, costs £182,000 per patient per year, and works for five per cent of people with CF who have a certain defective gene, around 270 people in England.
It corrects a malfunctioning protein which causes the characteristic build-up of fluid and mucus in the lungs that causes devastating damage.
It usually kills in the late 30s.
The drug, effectively allows sufferers to lead a normal life, and has been available in America since January, and is successfully trialled and licenced in this country.
However it has not yet been approved for use on the NHS and an expert specialist group is due to make recommendations to health service funding organisations by December.
Vertex Pharmaceuticals has offered to make the drug available on compassionate grounds to certain patients.