Simon Harris seeks CF drug alliance

The health minister has written to his ministerial counterparts in England, Scotland, Canada and Australia proposing they work together to access a new cystic fibrosis wonder drug at a “cost-effective price”.

The Department of Health and HSE is under sustained pressure from CF advocacy groups after it emerged that the HSE’s drugs committee would recommend this drug is not made available to patients as it is five times too expensive.

Health services in England, Scotland, Canada and Australia are also in negotiations with Vertex, the pharmaceutical company that makes Orkambi.

Mr Harris said Ireland and these countries could “adopt a common approach to engaging” with Vertex.

“Our country has a great track record of making innovative treatment available to patients. I am determined this continues. Securing access at an affordable price remains the priority.

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

Campaigners say the drug slows the progression of CF and cuts, sometimes dramatically, the rate of hospitalisation of sufferers.

Talks are continuing between between National Centre for Pharmoeconomics and Vertex but the HSE has said the price the pharmaceutical company is seeking is “unjustifiably expensive”.

Professor Michael Barry of the National Centre for Pharmacoeconomics has said that the price requested by Vertex would have to fall fivefold to make it feasible. Even at this, it would cost €30,000 per patient per year.

Orkambi is used in CF patients aged 6 years. It’s estimated that up to 505 patients would be eligible for the treatment.

The HSE recently completed a round of negotiations with Vertex. Its drug’s committee is sending its latest recommendation on the cost-effectiveness of Orkambi to the HSE Directorate.

Philip Watt, CEO of CF Ireland, said the weekend’s news was devastating for people with cystic fibrosis.

Cystic fibrosis is a genetic disorder which affects the glands, damaging many organs including the lungs, pancreas, digestive tract and reproductive system, impacting breathing, digestion and reproduction.

It causes thick sticky mucus to be produced, blocking the bronchial tubes and preventing the body’s natural enzymes from digesting food.

Currently there are around 1,200 people with cystic fibrosis in Ireland.