Thousands gather outside Dáil as negotiations on life-changing drug look set to restart

The Minister for Health said the company behind Cystic Fibrosis drug, Orkambi "must return to the table with a significantly better offer"

Thousands gather outside Dáil as negotiations on life-changing drug look set to restart

CFI Chief Executive, Philip Watt and Jillian McNulty. Image: Shane O'Neill Photography

Thousands of campaigners gathered outside the Dáil earlier demanding access to a life-saving drug to combat Cystic Fibrosis.

The manufacturer of the drug, Vertex Pharmaceuticals wanted to charge the HSE €160,000 a year per patient for the ground-breaking drug, Orkambi.

Speaking in the Dáil this afternoon, the Taoiseach Enda Kenny said the company is "ripping off" the Irish taxpayer and insisted that if they can "see sense," the drug can be provided to patients.

Outside the Dáil, up to 2,000 supporters, family members and Cystic Fibrosis patients called for the Government to immediately re-open negotiations with the company - after five months of talks failed to yield a resolution.

In a statement Wednesday evening, the HSE said the manufacturer "has indicated its willingness to re-engage in negotiations on the price".

“The charge being levied by the company is grossly excessive and they should retreat from that,” said Mr Kenny.

At the start of today’s protest, a minutes silence was observed to commemorate those who have died from the condition - with protestors placing purple flowers before the gates of Leinster House as they left.

A protestor places a purple flower on the gates of Leinster House. Image: Shane O'Neill Photography

Calling on the Taoiseach to come out and address the crowd, protestors carried placards saying “What price can you put on life?” and “Save my life; Yes Orkambi.”

Speaking to the protestors, Fianna Fáil leader Micheál Martin said he wanted to see the drug made available as soon as possible.

The Health Minister Simon Harris travelled to Lisbon this morning in the hope of gaining the support of his European counterparts to negotiate collectively with the company.

In a statement, Mr Harris said Vertex had agreed to re-engage with the Government in negotiations.

He said the company, “must return to the table with a significantly better offer.”

“This has not happened to date and I again call on the company to re-engage in a meaningful way,” he said.

“However, I was pleased to learn that Vertex has responded to the HSE today with a view to re-engage in negotiations with them on Orkambi.” 

He said he had raised the issue with his EU counterparts and intends to continue to engage with colleagues in Europe and beyond to find a solution.

"I want to see Cystic Fibrosis patients receive access to the best treatments possible,” he said. “That remains my priority."

One of the organisers of today’s protest, Cystic Fibrosis sufferer Jillian McNulty said Orkambi has changed her life:

Ms McNulty said she wished Minister Harris had taken the step of negotiating with his European counterparts earlier.

“I am just hoping that this is not going take another few months. Patients with Cystic Fibrosis need this drug now,” she said.  “We need this yesterday because patients with Cystic Fibrosis don’t have a tomorrow.”

Speaking to Newstalk Drive this evening, Fianna Fáil spokesperson on Health, Billy Kelleher criticised the government’s attempts at negotiation and said the process needs to be sped up:

Fianna Fáil leader Micheál Martin and Jillian McNulty. Image: Shane O'Neill Photography.

Vertex initially sought a price of €159,000 per patient per year to deliver the drug to 550 Irish people suffering with Cystic Fibrosis - a price it claims it has substantially reduced.

Speaking to Newstalk last week, former Health Minister, Dr James Reilly said the current price quoted would equate to half the cost of a new paediatric hospital over five years and warned buying the drug would mean cutting resources in other parts of the health service.

The Government is hoping to negotiate the price down to €30,000 per patient - however with Vertex expecting to recoup a significant portion of the €9bn they spent developing the drug, negotiations will not be easy.