Fury of dying cystic fibrosis sufferer's family after she is denied wonder drug by NHS bosses (UK)

A young cystic fibrosis sufferer is dying slowly in hospital after NHS chiefs refused to give her a new wonder drug - despite manufacturers offering to give it to hospitals for free. Caroline Cassin, 29, from Birmingham, West Midlands, was rushed to hospital last week after her condition suddenly worsened. She could benefit from new drug Kalydeco, which normally costs £182,000 a year - money that the cash-strapped NHS are unable to afford due to swingeing cuts.

 

Caroline Cassin, 29, is dying slowly from Cystic Fibrosis in Heartlands Hospital - NHS bosses have refused to give her a wonder drug that could save her life

Pretty blonde Caroline's condition worsened last Monday and she was admitted to the hospital for the sixth time since January

Pretty blonde Caroline's condition worsened last Monday and she was admitted to the hospital for the sixth time since January But despite makers of the drug offering to make it available free for a limited period, bosses at Heartlands Hospital say it would be unethical to treat patients only for the drug to be stopped at a later date. Campaigners are to take Caroline's case to the European Court of Human Rights claiming that the hospital's refusal to provide the treatment files in the face of doctors' Hippocratic Oath - which pledges that they must do all in their power to save lives.

The pharmaceutical company behind the drug, which will be re-branded Ivacaftor if made available in the UK, have offered to make the drug available to sufferers of the condition with a lung capacity under 40 per cent. Last Friday, Caroline registered a shockingly low 26 per cent. Five years ago, the pretty blonde could hold down a four-day-a-week job at Selfridges but was forced to cut her hours to three days and then one. From the age of 16 she has visited Heartlands twice a year for treatment. but when her health deteriorated alarmingly last Monday she was admitted to the hospital for the sixth time since January.

Caroline Cassin's devastated parents Neil, 72, and Carole, 65, say that the NHS Trust's refusal to treat their daughter with Kalydeco is 'cruel beyond belief'

Caroline Cassin's devastated parents Neil, 72, and Carole, 65, say that the NHS Trust's refusal to treat their daughter with Kalydeco is 'cruel beyond belief' She bravely told friends a month ago: 'I am clinging on.' Her frustrated father Neil, 72, said: 'She is very low now. She knows that she is dying. 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. 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. 'The drug would get rid of the bugs that impact on her breathing. It suppresses the problems. 'Her quality of life would be improved massively improved. She’s on the brink of death and she won’t get better until she has the drug. 'It’s the only chance of her having a life. She’s been on non-stop antibiotics. The drug could extend her life seven to ten years. 'The bugs that are being treated by the antibiotics would be flushed out. 'It would keep her out of hospital, help her breathing and she could walk around freely. They call it a ‘miracle drug’ in America. There’s a girl there who was on the lung transplant list but has been taken off it since she went on this drug. 'The doctors want to give it to her - but the hospital management stepped in and stopped it. 'They had told her she would get it and we were thrilled and delighted for her. 'It was a lifeline for her that was cruelly snatched away from her and she feels absolutely devastated and let down.

Pictured in healthier days, Caroline Cassin managed to keep up a four-day working week at Selfridges until her health recently declined

'I’m very angry and frustrated with the hospital bosses. She’s been back in hospital for a week now after just coming out. She’s lying in bed on oxygen helpless. It gets worse and worse.' Mum Carole, 65, aded: 'She has always been tiny, but very strong-willed. Now her face looks so different. She is very depressed. The situation is grave.' A Heartlands Hospital spokesman said: 'We fully support our patients and are doing everything in our power to facilitate a fair solution.

 

Caroline Cassin's furious parents say that the drug would improve their daughter's quality of life 'massively'

Birmingham Heartlands Hospital where Caroline Cassin is currently undergoing treatment for her worsening cystic fibrosis

'The Trust decided not to obtain Kalydeco on a compassionate basis because the drug company named patient scheme for free Kalydeco is temporary and the Trust would face withdrawing the medication when the scheme stops, which would be unethical. 'We have approached our commissioners to apply for funding and are putting together an exception application to the Primary Care Trust. 'As soon as we receive an update on our application for funding and the special exception application to the Primary Care Trust, we will share this with our patients and their families.'

A spokesman for NHS Birmingham and Solihull said: 'We are unable to discuss individual cases. However, we can confirm that to date we have not received a formal request for this drug. 'Any request we receive will be considered in line with guidance that has recently been received from Midlands and East Specialised Commissioning Group.'

Daily Mail UK

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