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CF campaigner Jillian McNulty

Simon Harris writes to other health ministers in bid to reduce cost of CF drug

The Health minister wants to team up with England, Scotland, Canada and Australia.

HEALTH MINISTER SIMON Harris has written to the health ministers in England, Scotland, Canada and Australia asking them to work together in a bid to reduce the cost of cystic fibrosis drug Orkambi.

The health services in these countries have all been considering access to Orkambi for people with CF.

They have been in talks with the pharmaceutical company which makes it, Vertex, to reduce the cost of the €160,000 per patient per year medication.

No decision has been taken to reimburse the treatment in any of these countries to date and the Irish health department has yet to receive the formal decision of the HSE Directorate in relation to Orkambi.

Earlier this week, the Sunday Business Post reported that the HSE’s drugs committee is due to recommend against funding the medication.

The HSE denied leaking the information to the newspaper, with a spokesperson saying: “The report and recommendations of the Drugs Committee will be considered at the next meeting of the HSE Directorate. Any distress caused to CF patients by the reportage prior to this is regretted.”

CF Ireland estimates that about 550 patients here could potentially benefit from the drug.

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

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.

“I have now written to my counterparts in England, Scotland, Canada and Australia and asked that they would collaborate with us to try and ensure we secure access for our cystic fibrosis patients to Orkambi at an affordable and cost-effective price.

“We must, I believe, adopt a common approach to engaging with this pharmaceutical company to learn from each other’s engagements to date and ultimately to try and achieve a fairer price for this medicine for the benefit of all of our cystic fibrosis patients and their families.”


Last month, CF campaigner Jillian McNulty, who is on an Orkambi trial, told how the drug transformed her life.

It has completely changed my life. I no longer live my life in a hospital. Before Orkambi I could never plan a week or two in advance, I knew I would get sick.

“I used to dread every morning because I would have a coughing attack, as would a lot of people with CF.

“I’d lie in bed for 10 to 15 minutes to let it pass before I’d use the nebuliser. Now can get out of bed every day like a normal person. For someone with CF that is massive.”

Read: Cystic fibrosis patients ‘dismayed’ at decision to not fund life-changing drug

Read: ‘Orkambi saved my life, other people should get access to it’

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