Fantastic that tears of fear of Longford Cystic Fibrosis campaigner Jillian McNulty have turned into tears of joy


Orkambi decision a life changing day Irish CF Community - Murphy
“Tuesday’s announcement is testament to the hard work of Cystic Fibrosis Ireland, and those living with the disease. I want to commend Longford native, Jillian McNulty and indeed a former colleague of mine in Shannonside radio who has been a fantastic leader on this important issue.
"I attended and supported the various protests at Leinster House with Jillian and despite many setbacks over the past number of years, they never stopped fighting, they never gave up hope and this decision is a life changing moment and a tremendous achievement.


Photo: Jillian McNulty and Deputy Eugene Murphy.
“Providing Orkambi to those living with CF will dramatically improve their quality of life. The news that the drug will be made available from next month is equally very important. There are many patients who have seen their health decline while waiting for this agreement. They need to start treatment as soon as possible.
“It is also most welcome that the HSE and Virtex have concluded agreements on the future use of other similar type treatments which may be used to treat different cohorts of patients.
“Providing access to Orkambi, and to other high-tech drugs, should be dealt with, and funded, via a separate fund, from the health budget,” said Deputy Murphy.
“Longer term, we need to look at how we can reduce the overall cost of these types of drugs in terms of bulk buying in conjunction with other EU member states,” concluded Deputy Murphy.
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