Health campaigners and politicians have branded as greedy a company trying to charge €159,000 per year, per patient for a new cystic fibrosis drug produced by a company whose chief executive receives an annual salary of $28 million. Ireland’s drug pricing expert Michael Barry has accused Boston-based company Vertex Pharmaceuticals of putting shareholders before patients. The new drug Orkambi is much sought after by 550 cystic fibrosis patients in Ireland.  Professor Michael Barry, clinical director of the National Centre for Pharmacoeconomics which advises the Health Service Executive (HSE) on drug prices, reckons €30,000 a year per patient is a fair price for Orkambi.

After several months of negotiation the HSE is due to make a final decision next Monday on whether to fund access to the drug. Meanwhile, Health Minister Simon Harris has written to his ministerial equals in England, Scotland, Canada and Australia asking them to work with him to ensure Orkambi is available for patients at a cost-effective price.

“Our country has a great track record of making new and innovative treatment available to patients. I am determined that this continues,” Harris said.

Securing access to treatments for patients at an affordable price remains the key priority.

“However, we cannot have a situation whereby exorbitant prices make it effectively impossible to access a new treatment like Orkambi,” Harris said.

32 cancer drugs have been approved in this country since 2012;only 2 have been approved for Cystic Fibrosis in 20 years - @MichealMartinTD

— Fianna Fáil (@fiannafailparty) December 7, 2016

Irish officials claim Vertex refuses to negotiate an acceptable deal. Barry, who is also on the HSE’s drugs group, said the group was sticking to its recommendation that the drug is not value for the price Vertex is seeking.

He said Orkambi would only work for about 25 percent of patients. “You’re being asked to pay a really high price for a drug which won’t work in a lot of people,” he said.

His center had suggested that ways around combating the high price could include a “risk sharing” approach between the HSE and the drug manufacturer. The HSE would only pay for the drug in every case in which it was effective. Vertex has said that it engaged in a meaningful way with the HSE to try to reach a funding agreement. But Barry insisted this was not the case.

“It’s true they’ve engaged. I think they could have engaged in a more meaningful way. I think to be honest we need to be very frank about this that Vertex needs to put patients first and the well-being of shareholders second,” Barry said.

A spokeswoman for Vertex said it had instead proposed an alternative risk-sharing scheme whereby the HSE would pay based on how responsive a person was to the drug.

She said the HSE would pay less if the response was less than agreed and more if the response was better than agreed. Her company regarded such an arrangement as “a true sharing of the risk.”