‘I encourage people to take clinical trials, they can make a huge difference’
Cystic fibrosis campaigner tells of how taking part in Orkambi clinical trial changed her life
Cystic fibrosis campaigner Jillian McNulty outside Leinster House
Jillian McNulty believes she would not be here today if it wasn’t for Orkambi.
The medicine, which she accessed via a clinical trial, is a combination of lumacaftor and ivacaftor and is produced in a single pill form. “I have lived a fairly normal life considering I have been in and out of hospital from time to time,” says the Longford woman, who was diagnosed with cystic fibrosis at birth.
“The idea to try Orkambi came about as I was sick for years and I asked professionals about the trial. I knew the Orkambi drug was out there.”
It was common for the cystic fibrosis campaigner to go to hospital every month, for periods as long as 12 or 13 weeks. Then, a few years ago, her condition became considerably worse.
McNulty doesn’t exercise as much as she used to before her condition began to worsen, yet nowadays is feeling more energetic than ever. She no longer feels the fatigue that used to impact her daily routine.
“My life is different in how I used to have to run to literally stay alive. So I don’t run so much anymore, I’ve trouble with my tendons now anyway. I have so much more energy. People don’t realise I used to have to nap for three or four hours a day. I couldn’t function otherwise. My mam used to have to drive me around because I’d be too tired.
“Nowadays, when I’m campaigning, I’m up at six and I sometimes don’t get home until nine or 10. I’ve been driving to Dublin, meeting Ministers and working 22-hour days.”
McNulty is one of the speakers at “AWARE for All”, an educational event on clinical trials which takes place at the Trinity Translational Medicine Institute in Dublin’s St James’s Hospital on Wednesday, December 5th (5pm-8pm). Register for free at awareforall.org.
Orkambi has considerably reduced the time Jillian would have typically spent in hospital. In 2018, she has spent just six weeks in hospital, which is a “huge difference” from the eight or nine months a year she was accustomed to.
The Orkambi therapy did not see an instant improvement for Jillian, who found it hard to tolerate as it began clearing her system. However, when things did begin to improve, her life changed for the better and she now has more opportunities than before. “After six months I really improved. I can plan things now. I know when I’m planning something that there’s a 90 per cent chance I’ll be fine. I’m organising a Valentine’s ball on the 9th of February at Lough Rynn Castle in Leitrim where all proceeds are going to Cystic Fibrosis Ireland and the CF ward at St Vincent’s Hospital. If I don’t take this chance to urge people to attend I’ll be shot!”
Jillian has said that she could have died from infection had she not been on the trial. “It’s important to remember that I had access to the drug five years before everyone else. I encourage people to take clinical trials, they can make a huge difference. I can’t praise Orkambi enough.”