Local Cystic Fibrosis (CF) campaigner, Jillian McNulty is spearheading a campaign to get Orkambi funded by the Irish Government.
On Wednesday, December 7 at 1:30pm a protest will take place outside Dáil Eireann where it is expected that close to 300 CF sufferers and their families will descend on the streets in an effort to highlight to the powers that be, the importance of funding Orkambi here in Ireland.
Speaking to the leader this week Ms McNulty said that CF sufferers had now been waiting nearly five months for negotiations between Government and agencies to conclude in respect of Orkambi and making it available to Irish CF sufferers.
“We are waiting too long,” she fumed this week.
“This protest is to highlight how important this drug is and how much we need it.”
Ms McNulty has made contact with all TDs and senators in the Dáil over the past few weeks and has received support from many including Michael Martin, Ruth Coppinger, James Brown and the Healy-Rae brothers.
Last week, however, Ms McNulty was shocked to receive an email from Deputy Eoin Ó Broin who was addressing his secretary but inadvertently sent the mail back to the Longford woman.
Her request to Mr Ó Broin was met with the following email response: “Give them a general response and say I will do my best to get to it.”
The shocked Longford woman posted the response on Facebook, saying: “That moment when a TD sends THIS to me instead of their secretary”.
She followed up with Mr Ó Broin, sending another email saying, “Many thanks for your email which I assume was meant for your secretary”.
She pointed out it was a personal invite from her so saying give “them” a response was “quite patronising”. “Do you not realise this is actually a matter of life and death? Myself and approximately 550 cystic fibrosis patients in Ireland are waiting on Orkambi to be made available. People have lost their lives waiting, more people WILL lose their lives waiting.
She added: “I find it quite disheartening that while you made time to send your secretary a quick mail to send me a general response thinking it will keep me happy, you couldn’t find the time to send me an actual genuine response”.
Speaking to the Leader on Monday, Ms McNulty pointed out that Deputy O’Broin later rang her and apologised for the misunderstanding.
“To be honest everyone is very supportive and we would be asking people with CF to wear masks on the day because of the risk of cross infection,” she added.
On the day, the protest will begin with a minutes silence for all those who have lost their lives to CF in Ireland.
Purple roses will then be pinned to the railings outside the Dáil and protesters will then release a number of balloons to mark the occasion.