Huge crowds have gathered outside the Dáil this afternoon to call on the HSE to make a revolutionary new treatment for Cystic Fibrosis available in Ireland.
Orkambi, produced by pharmaceutical company Vertex, has been found to have a life-changing impact on some patients living with CF, slowing the progression of the disease and improving quality of life.
Given that Orkambi is not affective in all cases and currently costs approx. €160,000 per patient per year, the HSE was recently advised that it did not represent “value for money” and shouldn’t be introduced.
CF patients, their families and supporters have today joined together to protest at the decision and are calling on Health Minister Simon Harris to intervene.
You can follow the march and the campaign for the introduction of Orkambi on Twitter at YesOrkambi and #YesOrkambi.
1. On the current ongoing battle for Orkambi and the demonstration today.. It’s so frustrating to see this. When I left Ireland I had
— Orla Tinsley (@orlatinsley) December 7, 2016
2. that sense that we would have to return like this to the subject because the right thing would not be done by those who have the power.
— Orla Tinsley (@orlatinsley) December 7, 2016
3. I hoped I was wrong but found myself every few months worrying what on earth was going on with Orkambi access and negotiations
— Orla Tinsley (@orlatinsley) December 7, 2016
4. in Ireland and then in greater Europe too. We with CF are used to battling for our care but I had hoped a new generation would not be.
— Orla Tinsley (@orlatinsley) December 7, 2016
Sending courage and solidarity to all of those fighting for Orkambi today.
— Orla Tinsley (@orlatinsley) December 7, 2016
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