Health Minister: Cystic Fibrosis patients will continue to get Orkambi during price negotiations
HEALTH Minister Simon Harris has insisted that Cystic Fibrosis patients currently on the drug Orkambi will continue to receive it while negotiations about the price charged by its manufacturers continue.
The minister said the today that he would “do everything possible” to drive down the cost of drugs and wants to raise the issue with his EU counterparts.
It comes after the National Centre for Pharmacoeconomics said Orkambi, which costs around €159,000 per patient, is too expensive.
Around 500 CF sufferers are understood to want the breakthrough drug and Cystic Fibrosis Ireland has expressed dismay at the ruling. .
However, Mr Harris told reporters today that he wants to reassure patients that “this process is far from finished”.
“There is significant work to do to negotiating on price and I want that negotiation to continue as a priority.
“I do not want them [patients]to think that in any way, shape or form that the decision is made or that the decision is final,” he said.
In the meantime, Mr Harris gave a guarantee that CF patients who are already taking Orkambi on a trial basis will be able to continue to receive it at the State’s expense.
“For patients on the drugs today, and I heard some patients very concerned about the future provision of it, they will continue to receive that drug while the assessment goes on,” he said.
The minister also said he has asked the HSE to come up with a “better policy framework” so that politicians are not the people who make decision in relation to the provision of life-saving medicines.
“If I was an Irish patient or the family of an Irish patient I would want the decisions made in relation to the access to drugs by clinicians rather than by any politicians,” the minister said.
Mr Harris is to raise the issue of drug prices with other EU health ministers later this month in a bid to see if countries can work together to force prices down.
“We have to do everything we possible can to drive down costs of drugs in Ireland. We spent €1.7bn last year providing drugs. When you take out the cost of staffing it’s one of the single biggest costs in our health service,” he said.
“I want to talk to European health ministers on this. I want to look at what we can do on a European-wide basis. I want to talk to them about what other countries do. We need to learn from each other on this.”