Medical marvels that give us reasons to be cheerful
Ten years ago this week, Liveline was engulfed in one of the most profound, moving and heartfelt campaigns when cystic fibrosis sufferers took over the airwaves. Years of frustration at the lack of action in Ireland on CF, despite the fact that we have the highest incidences of this life-limiting illness in the world, had finally exploded. And there was no going back. Every single programme that week ten years ago was dominated by the stories of cystic fibrosis sufferers. The statistics were shocking. Apparently, it’s in our Celtic DNA: one in 19 Irish people carry the CF gene. And the outlook for sufferers in the Republic was not good. The average lifespan was ten years shorter than in Northern Ireland while in Canada, the average lifespan of a CF sufferer was 47 – compared to 21 in Ireland!
Tragically, many of those who spoke out that week so powerfully – like Anita Slowey, who was 21 at the time – died within a few years of the broadcast.
The dramatic outpouring of anger was sparked by the words of campaigner and CF sufferer Orla Tinsley. Following the tragic and sudden death of top model Katy French, 24, a few weeks previously, Orla wrote: ‘As the public mourned Katy French and the lens on cocaine in Ireland started to get focused, I thought wildly that maybe if I got engaged and broke up with a slightly well-known person, did some lingerie modelling and then died, if I fought off my illness long enough, maybe something would be done. Maybe the Taoiseach’s aide de camp would come to a cystic fibrosis funeral and see something he would remember, something that he might report back.’ I was reminded of these events by the good news from Orla Tinsley this week, who got a double lung transplant a few days before Christmas in New York.
Afterwards, she wrote on Twitter: ‘Today, after two weeks’ hard work, I walked 400m. It felt amazing. My body was tired but my lungs were not. I am so grateful to my donor and I am constantly amazed at my new lungs.’
It marks the beginning of what I think will be a remarkably positive year for the CF community in Ireland. Orkambi – one of the most significant drugs ever developed in the fight against the genetic illness – is now also being made available here to children between six and 11. This time last year, indefatigable campaigner, Gillian McNulty was in the media pleading for finance for Orkambi – and she and the campaign by CF Ireland succeeded.
It is a new dawn for CF sufferers and their families. Indeed this could be the year of remarkable breakthroughs in the treatment of killer diseases such as cystic fibrosis, Huntington’s disease and malaria. Malaria is the single greatest cause of death in the history of humankind. Funding for research has increased twentyfold in the last five years and miracle medicines will be made available this year, mainly due to the funding from the Bill and Melinda Gates foundation.
At the beginning of 2018, we have more reasons to be cheerful than we might imagine. (To get an organ donor card , freetext the word donor to 50050).