Dáil protest planned over Orkambi delay

Negotiations between drug manufacturer Vertex and the HSE have been ongoing in an attempt to lower the price of the drug

Dáil protest planned over Orkambi delay

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

A second protest will take place tomorrow demonstrating against the government's delay in securing the approval for Orkambi drug therapy.

Orkambi, made by Vertex Pharmaceuticals, is the first therapy to treat the underlying cause of cystic fibrosis in over 500 patients.

Negotiations between Vertex and the Health Service Executive (HSE) have been ongoing in an effort to lower the price of the drug - a proposed €160,000 per patient per year.

Space

The Minister for Health Simon Harris 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 other drugs now and in the future.  

Commenting, the Minister said: “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 to CF patients."

Minister for Health Simon Harris previously criticised Vertex's price point for the drug, saying: "We cannot have a company that has a monopoly on one product engaging in price gouging. That's my fear that's what has happened to date.

"The important thing now is that the HSE have had contact from Vertex, and Vertex have said they wish to re-engage. So clearly what they said was their final offer is not any longer their final offer."

Former Minister for Health Dr James Reilly has previously said Orkambi has the potential to help around 25% of the 550 patients who suffer from a particular strain of the illness.

"The development of this drug should be a good news story for CF sufferers", he said. "We should be celebrating this breakthrough but instead this great innovation is soured because of what I believe is greed."

This is a second demonstration spearheaded by Jillian McNulty, from Longford, who has cystic fibrosis. Jillian was part of the Orkambi clinical trial in Ireland and is receiving the therapy as part of a managed access scheme. Jillian has received a commitment that she will continue to receive the therapy pending the outcome of discussions over reimbursement but no assurance beyond that.

A minute's silence will be held for those who have lost their lives to cystic fibrosis with those in attendance holding purple balloons and purple roses as an expression of solidarity.