Stephanie Smyth from Lusk, Co Dublin, with her son Sam Mullen (7) who has cystic fibrosis at the protest at Leinster House. Photo: Tom Burke

Negotiations between the HSE and the makers of the expensive cystic fibrosis drug Orkambi are to resume in the hope of agreeing a new price which would make the drug available to patients with the disease.

The drugs company Vertex had responded to the HSE call to re-engage, Health Minister Simon Harris said.

Yesterday, up to 2,000 demonstrators filled the streets outside Leinster House chanting "Come out Enda" as they warned that more cystic fibrosis patients would die unless they got the powerful drug.

The original price of €159,000 for the drug per patient annually was rejected by the HSE and a recent new offer also resulted in a stalemate, despite desperate pleas from over 500 cystic fibrosis sufferers who might benefit from it.

Mr Harris, who was attending a meeting of EU health ministers during the protest, later announced that talks on the drug's price were set to resume.

"I have always said that Vertex needs to re-engage in a meaningful way with the HSE that addresses the core issue of price and affordability," Mr Harris said.

"In that context 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."

The protest was led by cystic fibrosis sufferer Jillian McNulty, who has seen a dramatic improvement in her state of health since taking Orkambi on a trial basis.

The mood veered between anger and poignant sadness as placards with the photos of sons and daughters who have already died young were held up.

"Enda come out and look me in the eye," Ms McNulty, who addressed the emotionally charged gathering, said.

Among those campaigning for the drug is Phil Dunphy, of Rathangan, Co Kildare.

Her law graduate daughter Sarah died at just 23 from cystic fibrosis two years ago.

Clasping a picture of Sarah she said her son Shane (19) also had cystic fibrosis and needed the drug.

"There have only been two drugs for cystic fibrosis in the last 20 years," she said.

"We don't begrudge other patients with other illnesses new drugs but not a lot of money has been spent on our children.

"It costs tens of thousands to care for people with cystic fibrosis who are admitted to hospital.

"Has anyone done an analysis of the cost of this against the price of the drug?"

Teenager Ruth Nolan, from Malahide in Dublin, wore an oxygen mask to highlight the severe breathing difficulties which cystic fibrosis sufferers must struggle with.

"I am in and out of hospital and I don't feel well. My lung function is falling. I have the gene that makes me suitable for Orkambi," Ruth, a fourth year student in Santa Sabina school, said.

The gathering was addressed by Fianna Fáil leader Micheál Martin who called for intensive talks to resume.

In response to the decision by Vertex to resume talks the HSE said last night it wanted the negotiations to start "immediately". It called on Vertex "to make it clear to the Irish public the price it intends to charge for this medicine and to stop hiding behind commercial confidentiality clauses".

Irish Independent