Tears for sister who died of Cystic Fibrosis
Aisling Golden is comforted by her mother Terri as she sheds a tear for her sister Grainne, who died of Cystic Fibrosis, at a protest at Leinster House yesterday. Health Minister Simon Harris has defended asking for the protest to be cancelled.
HEALTH Minister Simon Harris has defended asking cystic fibrosis sufferers campaigning for access to the powerful drug Orkambi to cancel a protest outside Leinster House.
The minister made the request to Cystic Fibrosis Association chief Philip Watt and Jillian McNulty, who suffers from the condition, at a hastily convened meeting on Monday evening.
He told the Irish Independent 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”.
He had invited them to a private meeting to update them on progress in talks to agree a new price for the drug described as “life-changing” but was deemed too costly at €159,000 per patient annually.
Ms McNulty, who believed she was being summoned to the meeting to hear that a deal has been struck, described her shock when he asked not to go ahead with the protest which attracted a large turnout yesterday.
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 insisted.
Mr Harris said yesterday he hoped to conclude a deal with Vertex, makers of the drug, “very shortly”.
It is likely Cabinet approval may have to be sought to fund the drug as well as an extension for another new medicine 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 which would include the two existing drugs as well as access to another medicine VX-661 which is at stage three trials. It also looks set to lead to major health benefits for cystic fibrosis sufferers with a specific gene mutation. A spokeswoman for Vertex said yesterday 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. 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.” He was “extremely conscious of politicians acting as spokespeople for Vertex when everyone’s priority should be to secure the best deal for patients and the taxpayer”.
Fianna Fáil leader Micheál Martin, who praised Ms McNulty’s powerful article on the desperate need for the drug, which appeared in yesterday’s Irish Independent, was among the TDs who attended the protest.
Others included Fianna Fáil Dublin West TD Jack Chambers and Fianna Fáil TD for Sligo-Leitrim Marc MacSharry.
The gathering outside Leinster House included several emotional testimonies by the relatives of cystic fibrosis suffers who died in their teens and early 20s.
Among them was Ashling Golden who lost her sister Grainne to the disease a year ago.
Cystic fibrosis sufferer Anthony McCormack (21) from Donaghmede attended in his wheelchair.
His health has deteriorated and he is hoping to get a double lung transplant.