Donegal councillor speaks of cystic fibrosis drug impact

A Donegal County Councillor has spoken of the impact cystic fibrosis has had on his family as he urged the local authority to support a motion calling for a new breakthrough drug to be made available for those who need it.
Councillor Gerry McMonagle told the members at the January meeting of the council that one of his brothers passed away from cystic fibrosis, while his younger brother is currently living with the condition.
He asked that the council call on Health Minister Simon Harris to ensure that the drug Orkambi be included on the General Medical Services and Long-Term Illness schemes.
Cllr McMonagle said Ireland has the highest level of cystic fibrosis in the world and the new drug can help improve the lives of those living with the most common form of the condition.
“The is still no agreement on the drug. It is expensive but there is great progress for those who receive it. It reduced hospitalization and increases their health and gives a glimmer of hope,” he stated.
He said there are up to 600 people in Ireland who would benefit from Orkambi, adding that places such as Germany have adopted the use of the drug to good effect.
The motion was seconded by Cllr Jack Murray who said the issue was “very close to Cllr McMonagle’s heart”.
He said the fact the drug had not been adopted on such scheme as that it was deemed too expensive and “not value for money” was a “hugely insulting and a horrible thing to say” for those who are living with cystic fibrosis.
He added that provision of the drug was “life or death” for many of them.
Council Cathaoirleach, Cllr. Terence Slowey, said he would ensure the letter was sent to Minister Harris.
It has been reported that the Health Service Executive and the makers of Orkambi failed to reach agreement in price talks drug recently.
It is understood that Orkambi manufacturer, US-based firm Vertex Pharmaceuticals, made a new price offer in renewed talks early in the new year, but subsequent their company representatives and those acting on behalf of the HSE failed to produce an agreement.