Deal struck on cystic fibrosis drug Orkambi

The intention is that the drugs will be made available to suitable cystic fibrosis patients from next month.

Deal struck on cystic fibrosis drug Orkambi

A cystic fibrosis sufferer holding a box of Orkambi tablets outside Leinster House in Dublin | Image: RollingNews.ie

A deal's been done between the makers of the cystic fibrosis drug Orkambi and two other drugs and the Health Service Executive (HSE).

Speaking in the Dáil, Health Minister Simon Harris said:

"I am pleased to inform the House, but most particularly CF patients, their families and friends, that the HSE and Vertex have today confirmed that an agreement has been reached in principle on the commercial terms for the supply to Irish patients of Orkambi (for patients aged 12 years and older) and for Kalydeco (for patients aged 2-5) from next month.

"I am pleased that we are now in a position to reassure people we are now in the concluding stages of an agreement as I outlined earlier and expect the further work in the coming days will bring this matter to finality," he concluded.

Both parties are now working to finalise the contractual arrangements and complete approval processes in advance of May 1st.

Before negotiations began the drug was expected to cost the exchequer €400m over five years. Vertex dropped its price since negotiations began – although the final deal will still impose significant costs on the exchequer. 

“It is very important that Vertex step up to the plate as well,” he said prior to the deal being made.

Discussions over the price had been ongoing for over nine months.

Reaction

In statement, Cystic Fibrosis Ireland (CFI) said they "warmly welcomed" the joint statement from the Minister for Health and Vertex.

"While we have yet to see the full details of the agreement that has been reached, Cystic Fibrosis Ireland understands that it will be inclusive of all patients who have the potential to benefit from Orkambi and Kalydeco because of their particular CF genotype," the statement reads.

The charity also paid tribute to those who spoke out in favour of "ground-breaking" drugs Orkambi and Kalydeco in recent months, including Jillian McNulty and the Whitmarsh family.

Sinn Féin President Gerry Adams said the deal was a "massive victory" for cystic fibrosis patients. 

“We have heard from many with cystic fibrosis and their family members, emotive and heart-breaking stories," he said. “This is their victory and we must now ensure that Orkambi is made available without delay.”

Meanwhile, Fianna Fáil leader Micheal Martin said: “Today’s announcement is testament to the hard work of Cystic Fibrosis Ireland, and those living with the disease.

“Despite many setbacks over the past number of years, they never stopped fighting, they never gave up hope, and finally they have the decision they have dreamed of."