‘I’d been in hospital for months with cystic fibrosis, getting worse and worse. But Orkambi has given me my life back – it’s wonderful’

JUST five months ago, architect technician Robert Barker thought his days were numbered.

The father-of-one, who was born with cystic fibrosis, was on oxygen 24 hours a day, continually struggling to breathe.

His lung capacity had deteriorated to such an extent even a transplant wasn’t an option.

Today, however, the 34-year-old is a picture of health and able to enjoy bicycling with six-year-old daughter Katy, and it’s all down to a wonder drug which could potentially transform the lives of thousands of Scottish cystic fibrosis sufferers.

“I’m feeling great,” the young dad told The Sunday Post last night. “To be honest, life doesn’t get any sweeter.”

Robert – who languished in Glasgow’s Queen Elizabeth University Hospital, Glasgow, from July until January – won access to a drug called Orkambi.

It alleviates the crippling symptoms of cystic fibrosis but, costing £104,000 for a year’s supply, has been deemed too expensive for widespread use.

It is, however, available in Ireland, where health chiefs have recently done a deal with the drug’s manufacturers.

Campaigners here are optimistic a similar deal can be struck to ensure Orkambi is more widely prescribed in Scotland, which has among the highest number of cystic fibrosis sufferers in the world.

Robert’s wife Claire, 36, said the reversal in her husband’s condition has been miraculous.

She said: “Nearer Christmas time he became increasingly worse.

“His lung function was down, he was on oxygen all of the time.

“At Christmas he came home and was on oxygen all day and night. He couldn’t get from the sofa to the toilet without being severely out of breath. He was really poorly.”

Robert, of Carstairs, Lanark, knew his future didn’t look good.

He said: “I wasn’t giving myself long, because I knew how seriously ill I was.

“I’d been in hospital for months, getting worse and worse. I have no doubt that if I hadn’t been given Orkambi I wouldn’t be here today.

“The doctors never said Orkambi was my last chance, but they didn’t have to. Everything – my life and my family’s future was relying on it.”

Today, Robert is back at work full-time, has bags of energy and loves nothing better than getting out on the bike with doting daughter Katy.

It seems like a miracle, but while Robert continues to thrive, not everyone is so lucky.

Claire, an intensive care staff nurse, said: “Robert was given Orkambi Like a lot of other drugs, it’s very expensive and not available on the NHS, except on compassionate grounds.

“There are side–effects, like breathlessness, and I worried about that because Robert’s lung function was so poor.

“But within two weeks of starting Orkambi, two tablets in the morning, two in the afternoon, he began to make amazing progress, which just got better and better.

“Robert’s a very positive person. We never dwelled on the worst case scenario. We did discuss our finances, Katy, our home and things like that.

“And now he takes his Orkambi tablets along with his other everyday medication.

“I know it’s not a ‘miracle drug’, but it has saved my husband’s life, so to us, it is.”

Claire and Robert believe every cystic fibrosis sufferer who may benefit from Orkambi, should be given the chance.

Robert said: “It doesn’t work for everyone, but I’ve been lucky and started to get my life back. Who’s to say other people with cystic fibrosis wouldn’t also thrive on this medication?

“At one stage I couldn’t even get about the house. I had no energy. I couldn’t go out and I was hooked up to oxygen just to get a breath.

“I feel like a different person.

“But I don’t take my new life for granted. I know this is working for me and I’m making the most of it.”

Now the family are looking forward to a break in Corfu this summer.

Robert added: “I want to say thanks to my consultant and the staff at the Queen Elizabeth University Hospital in Glasgow for looking after me so well.

“And thanks for giving me the opportunity to get Orkambi.

I have my life back again and it’s wonderful.

“I just hope the day will come when anyone with cystic fibrosis, who might benefit from Orkambi, will have access to it on the NHS.

“For me, it’s been totally life-changing.

“I’m home again with my wife and daughter and back at work.

“I’m feeling great and, life doesn’t get any sweeter.”

Scotland is being urged to follow Ireland’s lead on accessing the life-saving drug Orkambi.

Dialogue between NHS National Procurement and the drug’s manufacturer, Vertex, has been taking place.

A Scottish Government spokesman confirmed health secretary Shona Robison had written to the manufacturer to take “forward discussions with NHS Scotland about pricing”.

The spokesman added: “We have significantly improved access to new medicines in recent years but are always keen to do more to improve access to treatments that can give patients longer, better-quality lives.

“We are working with partners including the Scottish Medicines Consortium.”