Radio Sandwell Local News

Cystic fibrosis sufferer wins her cause for miracle drug

2012-10-31 01:35:57

Caroline Cassin

A Cystic Fibrosis sufferer is celebrating after winning a year-long fight with a hospital to have access to a wonder-drug that could save her life.

Caroline Cassin, 29, was slowly dying after NHS chiefs refused to pay for a new drug that would help treat her Cystic Fibrosis.

But health bosses in Birmingham have now made a dramatic U-turn and agreed to administer Ms Cassin, a Selfridges shop assistant, with the drug Kalydeco.

Makers of the drug had offered to make it available free for a limited period but chiefs at Heartlands Hospital in Birmingham had insisted it would be unethical to let patients be treated, only for the drug later to be withdrawn.

It would cost the hospital £182,000 to continue the treatment when the drug was withdrawn for free by the manufacturers.

Five years ago, she could hold down a four-day-a-week job at Selfridges. Then she 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.

When her condition worsened alarmingly last week, she was admitted for the sixth time since January.

Her father Neil, 72, said: "Caroline has been very ill, she knew that she was dying.

"Caroline has struggled for 29 years and it has been horrendous at times, but the last year has been the worst.

"We are thrilled at the decision. Caroline is aware of what has happened, but I don't think it has sunk in yet.

Caroline Cassin

"The drug will 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 wanted 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."

Dr Aresh Anwar, Medical Director for Heart of England NHS Foundation Trust, said: "We have continued discussions with the company Vertex, who produce the drug Kalydeco.

"Following these discussions, we are very pleased to announce that they have taken the decision to offer the treatment on a compassionate basis to named patients, without limiting this offer to a fixed period of time.

"We welcome this decision and will now be taking up the offer.

"We will, of course, be sharing this update with those individuals who meet the patient criteria and their families."


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