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

Alan Walsh

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Alan Walsh

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alan.walsh@longfordleader.ie

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

Robert Troy TD, John Curran TD, Jillian McNulty, James Browne TD and Niamh Smyth TD.

Fianna Fáil TD for Roscommon/Galway Eugene Murphy has said that the agreement reached in principle between the Department of Health and Virtex, the manufacturers of Orkambi, is great news for the hundreds of patients, and their families, who have campaigned for years to get access to this life-saving drug.

“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.

"Attending the protests I was so often saddened by the plight of many young people clinging to life, the tears of one girl who lost her beautiful sister almost a year ago, a poor young man in a wheelchair so weak that he was unable to walk much of the time and the tears of parents, brothers, sisters who have lost loved ones over the years. It is fantastic that Jillian McNulty’s tears of fear for others have now turned in to tears of joy.

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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Longford campaigner Jillian McNulty ‘over the moon’ as life changing Orkambi to be made available to Cystic Fibrosis sufferers