Deal expected on cystic fibrosis drug within weeks

Cystic fibrosis sufferers and supporters gathered outside the Dáil this afternoon calling for life-saving drugs to be made available

Deal expected on cystic fibrosis drug within weeks

Cystic fibrosis sufferer Anthony McCormack (21) with his mother Linda McCormack outside Leinster House in Dublin, 01-03-2017. Image: Leah Farrell/

The Taoiseach has said negotiations on the price of groundbreaking drugs to treat cystic fibrosis could be completed “inside a couple of weeks.”

Patients and supporters gathered outside the Dáil this afternoon calling for access to the drugs Orkambi and Kalydeco.

Many patients have said their lives were transformed – and even saved – by the medicines, however negotiations with pharmaceutical companies have so far failed to bring down their cost.

It is believed that the HSE is hopeful of finalising a deal that would fund the cost of both drugs over a ten year period.

The Minister for Health Simon Harris is expected to seek Cabinet approval for additional funding for the deal if a compromise can be reached.

Aishlin Golden (24) who lost her sister Grainne to cystic fibrosis at age 21 joins the demonstration outside Leinster House in Dublin today, 01-03-2017. Image: Leah Farrell/

Cystic Fibrosis Ireland welcomed the news that progress is being made in relation to the approval of the drugs - but warned that for people living with cystic fibrosis “time is precious.”

“They have already been waiting nine months for a decision and almost two months since the revised offer came in from Vertex,” reads the statement. “We understand this revised offer provides a very significant discount on the original list price.”

CFI has called on the minister to consider the updated offer and speed up negotiations to make the drug available to around 500 Irish people suffering from the disease.

“The Minister made it clear that while he was against the protest today, it would not jeopardise a possible final positive decision,” they said ahead of today’s demonstration. “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.” 

Ten year plan

Minister Harris told the Dáil that the potential price on offer is “now a hell of a lot better” as a result of the ongoing HSE negotiations – but called for more time to finalise the negotiations.

He said he hopes to ensure cystic fibrosis sufferers are guaranteed access to the drugs over the longer term.

“I am going to do something that the House has never done before, namely, make sure that whoever is the Minister for Health in the future does not find himself or herself sitting around another table to negotiate prices for the next cystic fibrosis drug,” he said.

“We need to future-proof cystic fibrosis drugs for the next generation.”

The Minister said the negotiations should be complete in “a few more weeks.”

“We will get things done in the next few weeks and are in the final stages of commercial and contractual arrangements,” he said.

The Taoiseach backed Minister Harris’ strategy and said he hopes the deal, when it is reached, can provide certainty for those with cystic fibrosis in the country.

“The Minister is trying to bring about a situation where we are not going from year to year uncertain about what the future holds for any category of patients,” he said. “In this case, it is cystic fibrosis sufferers.”

He said he expects the Minister to conclude the discussions, “inside a couple of weeks.”

Original offer

Orkambi manufacturer, Vertex Pharmaceuticals initially planned to charge the HSE €159,000 a year per patient for the ground-breaking drug.

When the news broke concerning the dispute, the Taoiseach said the company was "ripping off" the Irish taxpayer with the HSE estimating approval would cost almost €400 million over five years.

The company said the price was already reduced as it attempted to recoup a significant portion of the €9bn spent developing the drug.

Before the talks began, the HSE said it was willing to pay up to €75 million.