‘A decade ago, I was in hospital 3 to 4 times a year’

It was as if a switch had tripped disrupting the flow of his life which up to then had been full and active.

So says John Hannan of the dramatic impact on his lifestyle of genetic emphysema or Alpha-1.

“It literally destroyed my life. It was a frightening thing. I didn’t know what was going on. I had always been very active, playing tennis, horse-riding. Then I found myself struggling around at work, in and out of hospital, constant chest infections.”

It took a while to diagnose Alpha-1, but his consultant at the Mercy University Hospital, Dr Neil Brennan, kept digging because emphysema was so unusual in a non-smoker. He was finally diagnosed in 2002 with the lung disorder whose milder symptoms include breathlessness and wheezing but which can also cause severe lung, liver and skin problems.

By 2006, the former civil engineer was on the drug Respreeza as part of a clinical trial, a treatment he says transformed his life.

“It took a while to get my energy back and feel like I wanted to do things again but my life now compared to 10 or 12 years ago is so much better. The fact that I haven’t been in hospital since 2012 speaks for itself. A decade ago, I was in hospital three to four times a year.”

John, whose family runs a horse-riding school in Mallow, Co Cork, says he’s back horse-riding after a hiatus of five or six years. He can also walk up to 5km on the flat, unthinkable prior to taking Respreeza.

His fear now is that the wonder-drug will be withdrawn. He and 20 others have been on Respreeza since taking part in the clinical trial, courtesy of its maker, CSL Behring, on a compassionate-use basis. But that arrangement, already extended, is due to expire. The pharmaceutical company is in negotiations with the State about whether it will agree to pay for the drug going forward. Respreeza is the subject of evaluation by the National Centre for Pharmacoeconomics who will decide if the drug is cost effective. The cost per patient per annum is c€60,000.

“I think one thing that has been missed in all this is that CSL Behring gave us a reasonable quality of life for 10 years and I would like to thank them for it. I am hoping, praying, that the evaluation will be in our favour. I’d hate to go back to what it was like before I went on it,” John says.

If the recommendation is not favourable, it will expose those on Respreeza to a totally unknown scenario.

“We don’t know what will happen if the drug is withdrawn. We might continue to benefit from having taken it for a while, or our condition could deterioriate rapidly. We just don’t know. We would be heading into the abyss.”