Cystic fibrosis campaigners push for Orkambi funding

Cystic fibrosis (CF) campaigns have launched a punchy social media campaign to persuade the Government to approve Orkambi, a drug that costs €160,000 per patient.

The #YesOrkambi campaign includes a video open letter to Taoiseach Enda Kenny and Minister for Health Simon Harris, called "Please don't put a price on our lives". The video features purple balloons, the symbol used by the CF community, being destroyed by this week's recommendation against the drug.

The campaign, which has urged people to tweet the two politicians using the #YesOrkambi hashtag, says more videos will be released in the coming days featuring people with CF talking about what Orkambi would mean to them.

Committed

The campaign has been devised by copywriter Bernie Martin, who has a daughter with CF: "My daughter may not have the particular CF genetics that this drug will treat, but that doesn't matter. Because if you pick on one CF Mum, you pick on us all. We're in this together. And we won't rest until that no becomes a Yes".

Orkambi, which greatly improves quality of life for CF patients, would cost the health service €392 million over five years, according to the negative assessment this week by the National Centre for Pharmacoeconomics.

The national centre recommended Orkambi should not be funded “at the submitted price” of €160,000 per patient per year and suggested the price should be cut five-fold.

CF Ireland has said the recommendation opens the door to further price negotiations with the manufacturer, Vertex Pharmaceuticals.