Thursday 22 February 2018

EXCLUSIVE: Health Minister 'arranged private meeting with Cystic Fibrosis sufferer to ask her to cancel Orkambi protest'

Jillian McNulty Picture: Damien Eagers
Jillian McNulty Picture: Damien Eagers

Laura Lynott

HEALTH Minister Simon Harris called a leading protester and charity CEO to a private meeting at the Department of Health to ask them to “consider cancelling” a protest for wonder drug Orkambi today, it’s been claimed.

Jillian McNulty, from Longford, said she drove for more than two hours on Monday “in tears” to attend the meeting with CEO of Cystic Fibrosis Ireland, Philip Watt, thinking Minister Harris would use the private meeting to announce he’d finally struck a deal to allow the drug, originally refused for its €159,000 price tag into the Irish market.

But Jillian and Mr Watt were bitterly disappointed when the Minister revealed the meeting was only to ask them to cancel a protest outside the Dail today, calling for the Orkami drug to be introduced.

“Simon Harris was wrong to do what he did,” Jillian told 

“He asked us to consider calling off the protest.

“I’ve always been very fair to Simon and I had a lot of time for him, so it was very unfair for him to do that.  It isn’t up to a minister to ask for protests to be cancelled.

Under pressure: Health Minister Simon Harris. Photo: Gerry Mooney
Under pressure: Health Minister Simon Harris. Photo: Gerry Mooney

“I drove two-and-a-half hours after Simon Harris asked me to come to a meeting.  If he wanted to ask me to cancel the protest, he could’ve done that over the phone.

“I drove up all excited on Monday evening and I was crying on the way up.  I thought he was about to announce the Government had come to a deal with Vertex, the pharmaceutical company, that we would finally be getting the drug in Ireland.

“But instead of that, I got to his office and he said ‘we need more time,’ and would I consider cancelling the protest.

“I couldn’t believe it, I was shocked - it’s obvious the momentum is building and a lot of people are aware of the protest and I believe the Government don’t want to be seen to be giving into public pressure.

“But a deal to reduce the price of the drug by Vertex was submitted in January.  What have the Department of Health been doing for two months and Simon Harris calls me two days before a public protest?”

Jillian said Minister Harris invited them to attend his office at the Department of Health for the bizarre request.

The cystic fibrosis patient says her life has been transformed by taking the drug and she has campaigned long and hard for it to become available for all CF patients.

She was lucky enough to receive the drug because she took part in a trial but most suffering the illness have not had the chance to see if Orkambi will help improve their condition.

She is now convinced that the “erratic” behaviour of the Minister was a sign of a political leader and Government on the ropes.

“I think Simon Harris is feeling a lot of pressure and it seems the Government are buying for more time, it feels this Government are about to collapse.

“I think they know their days are numbered.  I am not a political woman, I have no alignment to any political party but I will say it was it’s mostly been the independents and Fianna Fail who’ve attended my cross-party meetings on Orkambi.

“I’ve met with Simon Harris because of course he’s the Minister for Health but at this stage it’s a joke, this Government’s days are numbered.

“Simon Harris has a chance to make a legacy still though for himself here,  to provide cystic fibrosis patients with Orkambi and I know the price came down.

“So many cystic fibrosis patients are angry at what he’s tried to do by attempting to cancel the protest but he can get so many people on his side still if he stands up and is counted and says he isn’t listening to Enda Kenny, that this drug will be released to the Irish CF patients who haven’t got time to wait.”

The protest for Orkambi will take place from 1.30pm today until 2.30pm.  Jillian is hoping for around 500 protesters though she accepts “so many people who want to be here won’t be because they are seriously ill.

“We are talking people’s lives here and this Government know that.”

A spokeswoman for Minister Harris said:  “Minister for Health Simon Harris on Monday provided an update on progress in relation to Orkambi.  The Minister stressed that he expects the process can be concluded in a period of weeks and his overriding priority is to make sure that any agreement reached would provide certainty to Irish CF patients on the provision of Orkambi, Kalydeco and other drugs now and in the future.”

The Department did not respond to a request to see if and why he asked for the protest to be cancelled.

But instead the spokeswoman repeated a statement issued on Monday.  The Minister said at that time: “I am extremely conscious that the last number of months have been an extraordinarily stressful and worrying time for many CF patients and their families. 

“However, progress has been made and this process is now entering a critical phase.  I am asking for the space for this process to be concluded with the objective that we can achieve a deal which provides certainty now and in the future. 

“Given the level of investment and the scale of the potential benefits for CF patients, there are important commercial and contractual aspects which have to be agreed in the interests of patients and the health service overall.    In asking for the space to bring finality to this matter, I wish to assure CF patients and families that I believe the process can be concluded in a period of weeks."

Cystic Fibrosis Ireland posted on Facebook:  “Jillian McNulty and Philip Watt (CFI) were invited to a private meeting with the Minister for Health Simon Harris at short notice last Monday.

“The Taoiseach referred to this meeting in the Dail, so we can now publically acknowledge that meeting without breaking confidences. The meeting was courteous and constructive, but fell far short of a ‘yes’ decision on Orkambi and Kalydeco, as can be seen from the subsequent minister’s statement.

“The Minister made it clear that while he was against the protest today, it would not jeopardise a possible final positive decision. Once again we welcome the support and efforts by Minister Harris and we will continue to engage with him and the Government to ensure we get a positive decision. CFI will also continue to provide support with the CF community at this difficult and anxious time, Philip Watt, CEO CF Ireland.”

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