Drug f irm says lives at risk in price talks

CF patients grow desperate

THE pharmaceutical company making an expensive cystic fibrosis drug has warned against Ireland seeking to make a multi-country bid for lower prices because the process takes a long time – time which CF patients don’t always have.

It emerged this week that the HSE is on course to reject the high price charged by American company Vertex for the drug Orkambi.

Earlier this year, the National Centre for Pharmacoeconomics here recommended that Orkambi should not be funded ‘at submitted cost’.

The company is seeking the equivalent of €159,000 per person per year for the treatment. The HSE says it cannot pay more than €30,000.

Health Minister Simon Harris said he has written to other countries, including the UK, to see if they want to make a multi-country bid, which could result in a lower price.

One teenager, who is living with CF and using Orkambi, has told the Irish Mail on Sunday of the dramatic improvement to her quality of life.

Charlotte O’Donohue, 18, from Kildare was on a trial for three years. She said: ‘I feel like my life started when I was put on Orkambi.’

Vertex has come under fire for high prices in the UK and other European countries. Mr Harris said he had approached some of these countries, as well as Canada and Australia, to make a multi-country bid.

Vertex spokesperson Rebecca Hunt told the MoS: ‘Any negotiations that are under way are confidential, so unfortunately we can’t share if we are currently involved in multi-country partnerships at this stage.

‘Our concern about the minister calling for this now is that multicountry partnerships usually take a very long time to develop.’

She said it was now one year since Orkambi was licensed in the EU and that the company had ‘engaged in good faith with the HSE since then’, adding: ‘We had hoped an agreement was within reach and have been surprised by the latest developments.’

The MoS asked the Department of Health how many such multi-country agreements Ireland is currently part of, but it did not respond.

In March, Orkambi was rejected in the UK by the National Institute for Health and Care Excellence (NICE), which said the benefit that Orkambi offered was not cost-effective.

The price per patient per year put on Orkambi by Vertex for the British market was equivalent to €123,000, which is €36,000 less than the price given for Ireland and significantly less than the €242,000 for which the drug is sold in America.

In Ireland, as many as 40 patients are using Orkambi, either on compassionate grounds or through being involved with a trial, according to Philip Watt, head of CF Ireland.

‘I feel my life started when I was put on Orkambi’