Minister for Health expects Orkambi deal ‘within weeks’

Minister for Health, Simon Harris has said a deal to secure Cystic Fibrosis drugs, Orkambi and Kalydeco, is expected within weeks.

The cost of Orkambi has been a major stumbling block to the state securing its use for patients, and last week thousands affected by Cystic Fibrosis took to the streets of Dublin to voice their anger over the issue.

In a meeting held ahead of the protest, the Minister asked CF campaigner Jillian McNulty to cancel the demonstration, and yesterday he explained his reasons for doing so.

Speaking on RTE Radio One he said: “Yes I did, I thought long and hard about it, and I didn’t do it out of any disrespect for people that I have got to know very well, like Jillian McNulty and CF Ireland.”

He continued: “I’ve had a lot of private conversations with these people that I don’t want to divulge, but I think they know my bona fides in relation to this.

“What I made very clear at that meeting, and I’m happy to make very clear this morning, is that we are very close to a deal in relation to Orkambi, and it’s not just Orkambi, there is another drug called Kalydeco, but I have to get the best deal possible.”

The minister said the drug, which 650 people in Ireland are compatible with including nine-year-old Saoirse Brophy from Tallaght, is likely to be the most expensive ever purchased by the State, and he wants to be certain that any deal secures the long term availability of the drug for CF patients in the country.

He said: “This will probably be the most expensive drug we have ever purchased, and what I do not want to happen, whoever the next minister is in five or six years time, I do not want them to have be back sitting down at a table with CF patients, who are stressed and worried again, having to negotiate for the next iteration.

“I want to provide a programme of drugs for Cystic Fibrosis patients for the next decade.

“I need the State to get the best deal for taxpayers, but much more importantly for patients.

“I believe we can do that, I believe we are very close to doing that, and I expect this process to conclude within a matter of weeks.

“Cystic fibrosis families in this country have been waiting an awful long time for this, I understand their concern, and we are going to try and bring certainty to this issue within weeks.”