Price agreement expected on Cystic Fibrosis drug

A deal to secure either a price reduction or a risk-sharing arrangement for a revolutionary drug to treat Cystic Fibrosis is expected over the next couple of months, according to the National Centre for Pharmacoeconomics.

The drug Kalydeco, developed by Verdex, has been hailed by the Cystic Fibrosis Association of Ireland as “an exciting development” and described as “a game changer” by Dr Michael Barry of the centre.

The drug could extend the life expectancy of some patients by many years, but it is estimated it will cost each patient more than €234,000 a year.

On Monday the centre decided the drug was not value for money at that price and the HSE should not cover the cost for patients.

The drug is important in an Irish context because it is used to treat people with a type of Cystic Fibrosis caused by what is commonly known as the Celtic Gene. It is estimated that 10 per cent of Irish Cystic Fibrosis sufferers – about 120 people – will be able to benefit from it.

Price reduction

Dr Barry said last night, however, that he anticipated an agreement “within a short space of time”.

“It hasn’t been agreed yet but we are hoping to get a significant price reduction. The company are arranging to come over again for more talks.

“Knowing the excellent HSE team that are leading the negotiations and the approach the company has taken, I don’t think it will take long – there is a real willingness there to get an agreement so people can get on this drug. I would be very positive about it.”

Strike a deal

He suggested some time between early March and May as a timeframe for the agreement. “I would be very confident that we will strike a deal along that timeline.

“We accept that the drug works – there is no question - and we want to see people on it. Hopefully we can come to a satisfactory arrangement where everybody is happy.”

Joe Browne from Co Cork, who has a 12-year-old son, Pádraig, suffering from Cystic Fibrosis, said last night the development would be “hugely significant” for him.

“My spirits have been lifted by this. This is the closest thing to a cure that my son is going to see in my lifetime, so we are absolutely thrilled.

“For somebody like my son, it is going to make a huge difference to his quality of life.”