Ruth Coppinger (Dublin West, Socialist Party) | Oireachtas source

"Can someone please tell me why my life and the lives of CF patients in Ireland have a price tag on them?" That question was asked by Jillian McNulty, who has written to the pharmaceutical authorities in Ireland describing how her life was transformed while partaking in a trial of Orkambi over two years and how her condition has gone backwards and deteriorated since the trial ended. As we have the highest rate of cystic fibrosis in the world, with one in 19 people carrying one copy of the gene that causes cystic fibrosis, this is a major issue in Ireland. The Orkambi combination of drugs is beneficial for 60% of CF people, resulting in a 40% reduction in worsening symptoms and hospital admissions for those partaking in the trial. It results in an increase in lung function, an increase in weight and an increase in people's quality of life, delaying the need for lung transplants and lengthening life expectancy.

What exactly is the stance of the Government? Dismay was caused by the initial reaction of the HSE to the potential cost of Orkambi. How much value is the Government placing on the lives of cystic fibrosis patients? Orkambi was reportedly going to cost €92 million, which was compared to the cost of running Temple Street Hospital for a year. With only a few hundred people benefitting, it could not be afforded. I find that quite incredible. Irish Water, a company that nobody wants and nobody needs and a complete waste of money, spent €83 million on consultants last year, yet €90 million cannot be found for these patients.

We have to tackle the issues of the cost of drugs, who owns the drug companies, who conducts the research and the way people's lives are being placed in jeopardy by the profiteering of these companies. As my speaking time is running out, I will try to deal with this issue in my supplementary question. We have to deal with these companies that are profiteering from people's misery.

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