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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.”
Life-changing
Last month, CF campaigner Jillian McNulty, who is on an Orkambi trial, told TheJournal.ie 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.”
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If I hear anyone else say “life style choice” in relation to social welfare, I swear to God I wont be responsible!!!
The other thing that I m tired of hearing is “we need to reduce social welfare to motivate people to go back to work” Our TDs receive over €2500 pay per week, plus expenses, free transport etc and they are spending their time on how to cut child welfare by €10 and the dole by €8. Those who profit most from Irelands wealth are mostly tax exiles and pay nothing at all …is something wrong here?? Should we not be “motivating” those who earn €1 million plus to be paying their fair share?
I “live” on Social Welfare. Yes you could say it is a “lifestyle choice”. I have cardiac artery disease, diabetes and arthritis, and am on Disability Allowance. I get the same amount to exist on as someone trying to find a job. It is not a lot. In fact it is not enough. Do our T.D.s know or care? I think not. Would they do anything if they did know?
NO! Because they are not concerned about how ordinary people get by.
Oh Sugar !!
this country has thee most disconected politicians in relation to real life and how we cope and live with the decisions they make.
living on social welfare is a great lifestyle choice, i do it all the time :-P
It is an absolute disgrace what happened to Fr Kevin Reynolds and I am happy for him that his name was cleared. Why the hell won’t Dev jnr respect this mans wishes and those of Fr. Reynolds legal team?
Before cutting social welfare for single mothers, can we please first have a National plan to provide community childcare to every family? Community Childcare workers do a great job but when they have to be closed during school holidays, what’s the point?
Believe it or not, not every child in this country has a granny who can take over during school holidays.
Am I the only person who thinks the defamation by autocomplete thing is stupid? It would be like punishing a news reporter for reporting the news. It happened and people were looking up the recievership online to find out information about it so google took a popular term being used and suggested it as a search item. Google simpley did what it’s supposed to do, help people find information online in a quick manner by streamlining what is relevent to what people wanted at that time.
If the term “receivership” is now considered pejorative then google in Ireland had better beware, as the number of businesses in that situation is more likely to grow than shrink.
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