A protest will take place in front of the Dáil today in support of people with cystic fibrosis (CF) and the campaign for the approval of the drug Orkambi in Ireland.
The organiser of the protest is Jillian McNulty, a 40-year-old CF sufferer from Longford who has also lost a brother to the disease, which mainly affects the lungs and digestive system.
Here she explains why she is holding the protest and talks about her experience of Orkambi:
"Orkambi, for me, has literally transformed my life.
Before Orkambi, I needed to spend my life in a hospital bed for eight or nine months a year. For the four months at home, the quality of life was poor. I needed to sleep for two or three hours a day to even function. I couldn’t drive on long journeys myself. For 38 years of her life, my mother spent days, weeks and months driving me to and from St Vincent’s Hospital in Dublin.
I’d been in a sharp decline in the year before I started on Orkambi. I dropped 20 per cent lung function in eight months, which is a massive amount. I wasn’t responding to treatment and I was slipping very quickly. Then, along came Orkambi.
So when I was asked if I wanted to go forward to trials I said: “Yes, absolutely”.
I genuinely didn’t expect that Orkambi would do what it has done. I’ve been on Orkambi for three years and four months now.
I initially did get quite sick as my lung function was at the lower end of the scale
The drug works by removing mucus from deep in the lungs, it causes mass inflammation and infection because stuff is being moved that hasn’t been moved for years.
I was quite sick for the first couple of months, but since I got over the initial bumps in the road I haven’t looked back.
In the last two and a half years I’ve spent only 12 weeks in hospital, it would have been 22 months if I had not had Orkambi.
There are approximately 40 patients on Orkambi in Ireland, some, like me, on the trials.
Not everybody reacts in the same way, and it’s very hard to gauge, especially in Ireland, as some people are on compassionate use, which means their lung function must be quite low to gain access to the drug.
Orkambi is harder to tolerate, the lower your lung function is, so it is hard to judge in Ireland, with only 40 patients in the country
Some have responded really really well. I know some that have been on a transplant list and have left hospital, and some have been taken off the transplant list. Some have actually got sicker, so the reaction to the drug just depends on the person.
I’ve been campaigning for two years for this, I’ve been at Dail Eireann trying to get the support of TDs and Senators, trying to make them aware of what Orkambi has done and the potential it has.
I’ve decided to organise the protest in the hope that Enda Kenny, Simon Harris and the people in power will pay heed and listen and say: ”this drug needs to be made available”.
These negotiations are ongoing for six months. This is far too long for patients with CF. We don’t have that time.
I don’t know what to believe, because Vertex are telling me it’s the HSE, and the HSE are saying it’s Vertex - and I’m stuck in the middle
They just need to sit down and do a deal, now, not in six months
I’ve been told this week that Vertex will continue to provide Orkambi until a decision is made and ‘beyond’ - but they won’t clarify what they mean by ‘beyond’.
I don’t like that word because they don’t give a definite timeframe for how long I or other patents will continue on it. That is a bit worrying if there is a final decision and the Government won’t pay for the drug."