Cystic fibrosis campaigner takes on Eoin Ó Broin TD over email ‘error’

Eoin Ó Broin

Eoin Ó Broin hadn’t read the memo: How to retrieve potentially embarrassing emails after accidentally clicking “send”.

So when the Dublin West Sinn Féin TD sent an email intended for one of his admin staff to cystic fibrosis sufferer Jillian McNulty, he must have sincerely wished that he had.

Ms McNulty, from Longford Town, has long campaigned for the State to fund Orkambi, a drug manufactured by Vertex and described as “a game changer” in treating her condition.

When the National Centre for Pharmacoeconomics decided earlier this year that the drug is not cost-effective— it’s approximately €160,000 per annum per patient — Ms McNulty opted to continue her campaign.

She is organising a march on the Dáil on December 7 at 1.30pm, and she messaged every TD in Leinster to see if they would attend.

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.”

A shocked Jillian 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”.

When the Irish Examiner spoke to Mr Ó Broin, he said it had been a misunderstanding; he had asked his secretary to give Ms McNulty a “general response” while waiting for the party’s official policy position. He had also asked his secretary to indicate to Ms McNulty that he intended to attend the march. “I rang Jillian straight away and apologised profusely. I was not trying to palm her off,” he said.


Lifestyle

Conservationist Giles Clark takes on the illegal wildlife trade, as well as the task of building a bear sanctuary in Laos, South-east Asia, in BBC Two series Bears About The House.Five minutes with ... Giles Clark

Forget G-spots. Let's focus on the C-spot and close the orgasm gap once and for all.Sex File: The G-spot is dead. Long live the C-spot

Workshop leaders from the West Cork Literary Festival offer tips for writing in areas such as biography, short stories and travel, writes Des O’DriscollSo you want to be a writer?

'He told us we were so scared of dying, we forgot how to live” - Guru: The Dark Side of Enlightenment is this week's podcast pickPodcast Corner: Guru tells of sweat-lodge tragedy and James Arthur Ray

More From The Irish Examiner