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Cystic Fibrosis sufferer denied 'chance of life' drug by NHS

Cystic Fibrosis sufferer is being refused a "chance of life" drug by the NHS despite the manufacturer offering it to her for free, it has emerged.

Caroline Cassin, 29, who suffers from Cystic Fibrosis (CF) has been offered a new wonder drug free of charge for a limit period by the makers but her NHS hospital is refusing.  Photo: Caters

3:05PM GMT 28 Oct 2012

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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at Heartlands Hospital in Birmingham say it would be unethical to provide the drug under the deal, only for it to be withdrawn later.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.

Caroline’s father, Neil, 72, said: "Caroline has struggled for 29 years and it has been horrendous at times, but the last year has been the worst.

"She has always been a good girl, but she is very low now. She knows that she's dying.

"She has been given the golden crown, then had it snatched from her.

"The NHS Trust is sitting by while we are watching Caroline's health deteriorate at an alarming rate. How much longer can this go on?

"To have this one chance of life taken away after a lifetime of suffering is cruel beyond belief."

Jessica Nickless, vice-chairman the Ivacaftor Patients Interest Group, said: "If I stood by and witnessed someone being murdered I would be complicit to that murder, yet doctors can watch someone die. They are condemning Caroline to a slow, lingering death.

"For Caroline, it is now or never. We have almost exhausted every avenue."

A spokesman for Heartlands Hospital said: "We fully support our patients and are doing everything in our power to facilitate a fair solution.

"The trust decided not to obtain Kalydeco on a compassionate basis because the drug company scheme is temporary and the trust would face withdrawing the medication when the scheme stops."