Jillian McNulty from Longford town, has been on Orkambi for 3.5 years and it has completely transformed her life.
On Wednesday March 1, Jillian will lead a protest over Orkambi delays outside the Dáil from 1.30pm until 2.30pm.
"I've gone from needing to be in hospital for up to 9 months a year to just 12 weeks in the last three years. I haven't worked for 10 years but knowing just how much Orkambi has changed my life I am now considering getting back to work because Orkambi has given me a quality of life I thought was gone.
"Put simply CF patients need Orkambi now, we aren't promised tomorrow so we need Orkambi yesterday. Orkambi has given hope to the CF community & hope is all we have right now.
"This is the second Dail Eireann protest I have organised and spear headed and it is supported by Cystic Fibrosis Ireland. The ground-breaking drug Orkambi made by Vertex Pharmaceuticals is the first therapy to treat the underlying cause of Cystic Fibrosis in 500-plus patients here yet after months of discussions there has been no agreement to provide it.
"I was part of the Orkambi clinical trial in Ireland and am still receiving as part of a managed access scheme. I have received a commitment that I will continue to receive Orkambi pending the outcome of discussions over reimbursement but no assurance beyond that.
"Patients, their families and Cystic Fibrosis Ireland are very much supportive of efforts to reduce the price of Orkambi and of putting in place an affordable shared-risk agreement with the Health Service Executive. However, people with cystic fibrosis and their families do not have the luxury of waiting an indefinite period. They are demanding a speedy and positive resolution that would see Orkambi made available now."
It is anticipated that TDs and Senators will once again meet with organisers to show their support. A minute's silence will be held for those who have lost their lives to Cystic Fibrosis with those in attendance holding purple balloons and purple roses as an expression of solidarity.
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