Orkambi makers to meet HSE for CF drug-cost talks

The Health Service Executive and US makers of cystic fibrosis drug Orkambi, Vertex, are to meet on Wednesday, December 15th, to discuss the cost of the medicine.

Orkambi, which improves lung function and reduces hospitalisation for CF patients, would cost €160,000 per patient annually, or €400 million for the health service over five years, according to its initial price.

Agreed approach

The HSE is willing to pay €75 million which would make it the sixth most expensive drug used by the Irish health system.

Minister for Health Simon Harris said he has sought to collaborate with other countries on an agreed approach to negotiations on Orkambi and the HSE has cautioned Vertex it must ask a more affordable price.

The HSE and Vertex said they are committed to finding a definitive solution.

Vertex Pharmaceuticals said this week it will only re-enter price talks on Orkambi if Government representatives with the power to make decisions are at the table.

Vertex asked the HSE to commit to having Mr Harris, HSE director general Tony O’Brien and Department of Health Secretary general Jim Breslin at the talks.

Speaking in the Seanad earlier this week, Mr Harris said this was a “complete misrepresentation”.

“The law of this land, passed by this House and the Dáil in 2013, makes clear that the HSE is the body with statutory responsibility for decisions on pricing and reimbursement of medicines.”

Thousands of people protested outside the Dáil this week about the issue.