A Longford woman living with cystic fibrosis has spoken of how her life has been transformed by a groundbreaking new treatment which limits the progress of the disease.
Jillian McNulty from Longford town is one of eight over-14s currently trialling the Orkambi drug combination in Ireland.
“I’ve been trialling it since July of 2013 and since then the condition and my quality of life have improved dramatically. My lung function has remained the same since then,” she revealed. “I used to spend 24 to 30 weeks in hospital each year, and now it’s down to 11 weeks.
“It isn’t a cure – I still have cystic fibrosis and I still have to do my daily routine of physiotherapy and nebulisers – and I still get infections, but my body fights them better and I recover quicker.
“I have a lot more energy, too. I can now keep going throughout the day, whereas before I’d need to take a nap.”
This improvement in her overall health proved beneficial when Ms McNulty travelled to the United States last week, where she testified in favour of the treatment before a hearing of the Food and Drug Administration (FDA).
“I was staying in Washington DC, an hour from Gaithersburg in Maryland where the hearing was being held. I had to be up at 6am each day and I kept going right up until 10pm,” she explained. “There’s no way I could have done that a couple of years ago.”
“I was one of eight people asked to testify at the hearing and I was the only non-American. The panel consisted of doctors and medical professionals, and there was an audience of 300 people. While I was there I got to meet Fred Van Goor, the scientist who created the drug that has changed my life.”
Ms McNulty said she expects the FDA to approve the Orkambi treatment in the coming months and hopes its European Union equivalent, the European Medicines Agency, will follow suit later in the year.
However, it is not yet clear whether or not the Irish Government will provide the necessary funding to treat cystic fibrosis patients in this country with Orkambi.
“Kalydeco, one of the drugs used in the Orkambi treatment, costs around €240,000 per patient per year, and it’s estimated that Orkambi itself would cost around the same.
“The Government needs to pay for this as it would benefit up to 80 per cent of people here who have cystic fibrosis,” Ms McNulty concluded.