‘YES ORKAMBI’ CAMPAIGN CELEBRATE VICTORY FOR CF PATIENTS
LOCAL PARENTS CELEBRATE LIFE SAVING DRUG BEING PRESCRIBED
The local ‘Yes Orkambui’ campaign celebrated the news that the life changing drug will now be prescribed to children and adults battling the condition.
Health Minister Simon Harris confirmed last week that following negotiations with the pharmaceutical company Vertex, an agreement had been reached to make the drugs known as Orkambi and Kalydeco available.
A national campaign spearheaded by Cystic Fibrosis Ireland had long called for the drug to be prescribed to Irish patients.
Locally, Maire and Iain Gallagher, from Ravensdale, who campaigned on behalf of their son Cathal (10) who has cystic fibrosis, widely welcomed the news.
‘We had actually been watching the Dail debate, when we saw Minister Harris coming out, and it was expected he was to give an announcement on the drug’s availability,’ said Ian.
‘It was fantastic news, something that we as parents had fought so hard for. It will be a game changer for Cathal, a life saver really as it will give him the opportunity to grow up with better health.’
He added his hopes that Cathal could begin on the drug as soon as possible, now that an agreement has been reached to provide it to patients across Ireland.
Having constantly battled with the affects of the condition when he was younger Cathal is now ‘ dong very well, and even completed his first 5k recently,’ said his proud dad.
Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 1,200 children and adults in Ireland.
A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Welcoming the news, Dundalk TD Peter Fitzpatrick said: ‘Cystic fibrosis patients in Louth are set to benefit from this new deal between the Health Service Executive and pharmaceutical company, Vertex, which will see Orkambi and Kalydeco made available from next month.’
He added: ‘ The HSE are now working to finalise the contractual terms to make sure we have the best and most robust deal possible for CF patients and the healthcare service overall. The local TD described it as ‘ landmark decision for CF a patients and their families. The HSE and Vertex have reached an agreement in principle on the commercial terms for the supply to Irish patients of Orkambi for patients aged 12 years an older and for Kalydeco for patients aged 2 to 5 years and for other treatments and age cohorts following market authorisation in Europe.’
‘ This is great news for CF patients here in Louth/East Meath. I know that this has been a particularly difficult time for all cystic fibrosis patients and their families and hopefully this announcement gives them some degree of relief and certainty.’
Speaking of the announcement, Minister Harris said, ‘I was very pleased to be in a position to bring this news to CF patients and their families this week. I hope that it will help to finally put people’s minds at rest, knowing that the drugs their family and friends need will be available to them from the beginning of next month.’