CF protesters shocked by Harris' request to call off demonstration

Sisters Sarah Pender, who has CF, and Maeve (9) at the Orkambi protest at Leinster House

Laura Lynott and Eilish O'Regan

Health Minister Simon Harris has defended asking cystic fibrosis (CF) sufferers, who are campaigning for access to the life-changing drug Orkambi, to cancel yesterday's protest outside Leinster House.

The minister made the request to Cystic Fibrosis Ireland chief Philip Watt and Jillian McNulty, who suffers from the condition, at a hastily convened meeting on Monday evening.

He said yesterday that he "asked for space for important commercial and contractual aspects of the current offer to be agreed on the basis that the process can be concluded in a period of weeks".

Mr Harris had set up the private meeting to provide an update on progress in talks to agree a new price for the 'miracle' drug, which was deemed too costly at €159,000 per patient per year.

Ms McNulty, who believed she was being summoned to hear that a deal had been struck, described her shock when Mr Harris asked them not to go ahead with the protest, which attracted a large turnout.

She said the minister was wrong to make the request.

"It isn't up to a minister to ask for a protest to be cancelled," she said.

Mr Harris said he hoped to conclude a deal with Vertex, the makers of the drug, "very shortly".

It is likely that Cabinet approval may have to be sought to fund the drug, as well as extending another drug, Kalydeco, to younger children.

The HSE executive is expected to say it cannot afford to make the drugs available out of its own funds.

Vertex is believed to have presented the HSE with a package that would include the two existing drugs as well as access to another medicine, VX-661, which is in the third stage of trials.

It looks set to lead to major health benefits for CF sufferers with a specific gene mutation.

A spokeswoman for Vertex said yesterday that it submitted a new proposal in January and all outstanding questions were answered by the end of the month.

"Since then we have not heard back from the HSE," she said.

Advantage

The minister said yesterday that "at every stage in the process so far, Vertex has taken every opportunity to gain advantage by exploiting the genuine suffering of cystic fibrosis patients".

Fianna Fail leader Micheal Martin was among the TDs who attended the protest. Others included fellow Fianna Fail deputies Jack Chambers and Marc McSharry.

The demonstration heard several testimonies from the relatives of CF sufferers who died in their teens and early 20s. Among them was Ashling Golden, who lost her sister Grainne (21) to the disease a year ago.