CF charity renews call for deal on life-saving drug

Cystic Fibrosis Ireland (CFI) has reiterated its call to Government to swiftly conclude discussions with the manufacturer of a life-changing drug so that more than 500 patients can potentially benefit from the treatment.

Keelin Shanley with Jessica and Tom Cassidy at the launch of Cystic Fibrosis Ireland's 65 Roses Day appeal. Picture: Shane O'Neill

The plea came at the launch of CF National Awareness Week and nine months into the wait for a decision on whether the State will reimburse Vertex Pharmaceuticals for the cost of Orkambi, originally set at c€159,000 per patient per annum.

CFI is also hoping for a favourable decision on requests for an extension of the State’s reimbursement of Kalydeco, another Vertex drug.

It is reimbursed for CF patients aged six and older but campaigners are now calling for it to be available to children aged 2-5. However the National Centre for Pharmacoeconomics (NCPE) has already ruled this would not be cost effective.

CFI CEO Philip Watt said Orkambi and Kalydeco are “well documented in increasing lung function and slowing progression of the disease, in decreasing hospitalisations and dependency on other medications, and in improving quality of life for a substantial number of patients”.

“That is why we are calling on all sides to show generosity of spirit in quickly finalising a mutually-satisfactory arrangement,” he said.

Mr Watt said CFI was also calling for an overhaul of the current drug approval system, without which future CF therapies would fall at the hurdle of cost-effectiveness. Earlier this month, Health Minister Simon Harris controversially and unsuccessfully asked CF campaigners to call off a planned protest outside the Dáil on the grounds that talks with Vertex had entered a critical phase.

The Department of Health yesterday said it was “expected this process will conclude in a period of weeks”.

Ireland has the highest incidence (per head of population) of CF in the world.

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