'Absolute joy' - Cystic fibrosis campaigners welcome Orkambi deal

The HSE and pharmaceutical company Vertex have reached an agreement over the costly drug

'Absolute joy' - Cystic fibrosis campaigners welcome Orkambi deal

Photo:Leah Farrell/RollingNews.ie

Campaigners have warmly welcomed the announcement that the cystic fibrosis (CF) drugs Orkambi and Kalydeco will be made available to patients from next month.

Orkambi is prescribed for CF patients aged 12 years and older, while Kalydeco is for younger people and patients with a specific gene mutation.

Clinical trials have suggested that the drugs can slow the progression of the condition, as well as improving the quality of life of patients.

In recent months, the HSE and pharmaceutical company Vertex had been unable to reach an agreement over the high cost of the drugs.

Yesterday, the Health Minister Simon Harris, the HSE and Vertex confirmed that an agreement had been reached on the 'commercial terms' for supplying Orkambi to patients here.

Almost 600 people are expected to commence treatment in 2017 as a result of the agreement, which is set to be approved by the beginning of May.

Minister Harris said: "I want to especially acknowledge that this has been an extraordinarily difficult time for CF patients, their families and friends as they have been waiting for this process to conclude."

The announcement was welcomed by parties from across the political divides, while the Cystic Fibrosis Ireland group said the development is especially welcome "coming as it does during Cystic Fibrosis National Awareness Week".

"A frustrating and tough campaign"

Keith McCabe, whose three-year-old son has cystic fibrosis, spoke to Newstalk Breakfast this morning following yesterday's announcement.

He said: "Listen, it's [a feeling] of absolute joy. It's one that's been borne out of the last 10 or 11 months of what has been a frustrating and tough campaign.

"Yesterday evening, when we sat and listened to the announcement made by Simon Harris in the Dáil, it just gave that sense of hope and reality that yes, we now have a drug for the community that's going to give hope. It's going to make CF become a life-living condition rather than a life-limiting condition."

He explained what difference the drugs will make for his son, Senan.

"It stops the degeneration happening within his lungs. It enables him to free up [...] the 'channels' which are typically 'blocked' for people who have cystic fibrosis.

"People with CF have a thicker layer of mucus around their lungs and around their digestive systems. What these drugs will do... in theory it will free up those channels to enable him to live a better, freer and in theory a longer life."

He added: "It just gives parents like me, it gives people with CF who have been waiting for this a chance to try out this game-changing drug. [It gives them] a chance to just give it a go and see what it does for them."