CF campaign urges green light for radical new drugs

A CYSTIC fibrosis charity is urging the Government to approve groundbreaking new therapies that could improve the lives of more than 1,000 Irish sufferers of the disease ahead of an upcoming awareness week.

Cystic Fibrosis Ireland wants Irish policy makers to come to a deal with drug manufacturer Vertex Pharmaceuticals and give immediate approval to both Orkambi and Kalydeco medicines.

Both treatments have been shown to have proven effects in increasing CF patients’ lung capacity and slowing the spread of the disease, with Kalydeco therapy developed specifically to be used on children aged between two and five years old.

Taoiseach Enda Kenny told US President Donald Trump during their recent meeting that Health Minister Simon Harris was working with other countries to negotiate a collective price for the medicines.

Cystic Fibrosis Ireland CEO Philip Watts said: ‘Cystic Fibrosis Ireland is heartened by the recent comments of the Minister for Health, Simon Harris, that progress is being made in discussions on the approval of new therapies for people with cystic fibrosis.

‘We agree that a fair deal should be struck and that is why we are calling on all sides to show generosity of spirit in quickly finalising a mutually satisfactory arrangement.

‘Patients have already been waiting nine months for a positive decision, time that is precious to them. The delays must stop now.’ In 2015, there were 1,219 people with CF registered in Ireland, with the average sufferer aged 19 years old.

Cystic Fibrosis National Awareness Week runs from April 10 to 16 this year with 65 Roses Day – named for the way small children are taught to pronounce the name of the condition – falling on Thursday, April 13.

Volunteers across the country will sell purple roses for €2 each in a bid to raise €100,000 to fund healthcare, research and counselling.

CF Ireland ambassador and TV presenter Keelin Shanley is urging everyone to get involved.

She said: ‘It really is quite astonishing that the incidence of cystic fibrosis in Ireland is higher than anywhere else globally. We also have some of the most severe types.’

For more, visit 65rosesday.ie