Ministerinpraise ofCFfamilies
HEALTH Minister Simon Harris praised families of those battling Cystic Fibrosis for the success of their campaign for the drug Orkambi to be made available to CF patients, when he opened the national conference in Dundalk last weekend.
The annual Cystic Fibrosis conference was held in Dundalk for the first time in decades, with over 200 people from across the country in attendance.
It followed the successful campaign spearheaded by Cystic Fibrosis Ireland which had long called for the drug to be prescribed to Irish patients.
Locally, Marie and Iain Gallagher, from Ravensdale, who had campaigned on behalf of their son Cathal (11) who has cystic fibrosis, said they were delighted to have seen so many people from across Ireland at the event hosted by the Dundalk CF group.
‘It was a great success’ said Iain. ‘ There were 200 in attendance at the Crowne Plaza, which proved an ideal event.’
He welcomed the comments made by Minister Harris about the campaign led by CF Ireland last year.
‘ The Minister highlighted the success of the Orkambi campaign, but added that he hoped it wouldn’t have to happen again, and that new treatments would be more free flowing.’
Iain added that CF patients also welcomed the plans for a new ‘opt out’ donor scheme, which he said would be of ‘ huge benefit’ to those in need of a transplant.
Speaking at the launch of the Dundalk event, Minister Harris said he was ‘really pleased to have been at Cystic Fibrosis Ireland conference.’
‘ Together we’ve made big progress in last year. Let’s build further on it!’ before highlighting ‘More exciting plans for 2018 including opt out donor legislation, a new model of care for CF and anew CF unit for Beaumont.’
The Minister told delegates at the conference that new figures show that in Ireland life expectancy for people with Iain and Marie Gallagher, Dundalk CF with Minister for Health Simon Harris TD.
Cystic Fibrosis has increased significantly.
He added that the number of people with CF in employment is up, and that the number of people with CF living independently continues to rise. The number of people with CF married is also up. The Minister said he was ‘delighted to now be in a position to try and help improvements to the lives of those with Cystic Fibrosis.
Meanwhile, CF Ireland also launched
their annual ‘65 Roses’ campaign at the conference. ‘ 65 Roses’is a term often used by young children with Cystic Fibrosis to pronounce the name of their disease, and has become the fundraising campaign title.
Members of the Dundalk CF group will be in the Marshes shopping centre all day this Friday, April 13th, for the 65 Roses awareness and fundraising day, and are appealing for support.