Minister for Health Simon Harris has written to his ministerial equals in England, Scotland, Canada and Australia asking them to work with him to ensure cystic fibrosis drug Orkambi is available for patients at a cost-effective price.

The Health Service Executive has said that to date the drug had been “considered unjustifiably expensive and not sufficiently cost effective” by its drugs committee and the National Centre for Pharmacoeconomics.

A Sunday newspaper has reported that a formal announcement by the HSE was imminent after its drugs committee recommended against funding Orkambi at a recent meeting. The report said the committee had concluded the drug did not deliver sufficient benefits to patients to justify its annual price tag of €159,000.

About 1,200 people have cystic fibrosis in Ireland, where incidence of the disease per head of population is the highest in the world.

Cystic Fibrosis Ireland, the organisation that represents people with the condition, called on Mr Harris to intervene to ensure the “life-lengthening” drug was made available to about 550 patients.

Reimbusing treatment

The health services in Ireland, England, Scotland, Canada and Australia have all been considering Orkambi and have been engaging with pharmaceutical company Vertex.

No decision has been taken to reimburse the treatment in any of these countries to date and the Department of Health has yet to receive the formal decision of the HSE Directorate in relation to the drug.

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

“At the weekend, I assured cystic fibrosis patients that the process for accessing Orkambi is not over but that the manufacturer must further engage on a meaningful and innovative basis and significantly reduce their price.”