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A DRUG THAT can be used in the treatment of cystic fibrosis will not be funded by the government, it has emerged.
Orkambi is a drug that can be used in the treatment of cystic fibrosis – by tackling the underlying causes that lead to the condition.
The National Centre for National Centre for Pharmacoeconomics (NCPE) ruled today that the drug, at a cost of €158,000 per patient, wasn’t cost effective.
The NCPE ruled that the drug would cost over €391,000,000 over the course of five years.
Commenting on the NCPE decision, Philip Watt, CEO of Cystic Fibrosis Ireland (CFI), said that cf patients were “dismayed” by the decision.
“CF patients in Ireland are dismayed by today’s ruling from the NCPE which recommends that the ground-breaking drug Orkambi is not funded,” Watt said.
However the organisation said that the NCPE ruled that the drug wasn’t cost-effective at “submitted cost” which opened the door for future price negotiations between them and the company offering it.
CFI called on the government to enter into further negotiations with the pharmaceutical drug offering the drug – Vertex.
It also called on Vertex to significantly drop the price of Orkambi.
“We support a fairer deal for this drug but it will be a travesty if this drug is not provided to our patients or if there is a significant delay in providing this drug,” said Philip Watt.
Fighting face
Ireland has one of the highest rates of cystic fibrosis in its population in the world.
In an interview earlier this year with TheJournal.ie, Kelsey Nolan, who suffers with CF, spoke of her fight to have the medicine green-lighted in Ireland.
“CF doesn’t just affect my life and other CF patients’ lives it affects our families, friends, our day to day life and what we can do,” Kelsey wrote in a Facebook post in December of last year.
How is it okay for people to put a price limit on another person’s life or in this case hundreds of people’s lives.
Speaking to TheJournal.ie Kelsey said that people with CF “need” the drug and that receiving it would change her and other sufferers lives.
“It would change my life. It would give me my life,” she said.
And if it’s money people are thinking about, it will make sense in the long run to get me off medication and out of hospital beds which cost €1,000.
Compassionate access programme
Meanwhile, Health Minister Simon Harris today the welcomed the decision by the HSE to approve the cancer drug Pembrolizumab (or Pembro) for reimbursement.
The drug, along with another drug Nivolumab or were called “game changers” for treating cancer patients by Professor John Crown last week – who criticised the delay by the HSE in approving the dugs.
“I welcome today’s decision by the HSE to approve Pembrolizumab for reimbursement and I am sure this news will be a great relief to the patients affected and their families,” said Harris.
The compassionate access programme for the cancer drug Nivolumab has also been extended while the approval process in ongoing.
“I am pleased that Bristol-Myers Squibb have responded positively to my call to show compassion to patients being treated with the drug Nivolumab,” Harris said.
The compassionate access programme has been extended for 30 days until the end of June.
“A number of drugs, including the one referred to, are currently being considered by the HSE under the national medicines pricing and reimbursement assessment process,” said Harris.
I have asked the HSE to conclude their deliberations as a matter of urgency.
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One big problem in Ireland (Not entirely related to this article) is women with kids are encouraged to stay at home and have to depend on their husbands as creche fees are absolutely absurd. The price to put 2 children into my local creche is €1800 per month. This means that skilled women (in some cases men) are staying at home!
In Belgium they are subsidized so that they can work. Even a house cleaner is subsidized. This kind of system stops women having to stay at home to look after the kids and carry out house work and most importantly getting bullied by an unfair husband!
I don’t think subsidies are the way to go here. people here have this ‘the state should pay for my lifestyle choices’ mentality. Isn’t ireland broke? Why not pay a nanny to look after the kids when you are at work instead? have you a family support network, whereby your parents could help out?
Why didn’t you think of the costs a child involves before you had 2 children in the first place? people in westernized welfare state countries seem to just have kids and expect everyone else to pay for it. This doesn’t happen in the US, and it sure as heck doesn’t happen in any realistic state that doesn’t want to end up in the hands of the IMF.
No Lizzy.
Subsidies are the way to go if it means skilled women are going to be working and paying taxes, this will help Ireland. There are women with PHD’s that are staying at home to look after the kids as its not viable to put them into a creche. This is an awful waste of good skill.
No I don’t have a family support network, My parents are gone and my siblings have emigrated.
Also I don’t have 2 kids, I’m thinking about having kids so I suppose I did think of the costs a child involves as I went away and investigated it.
I was simply stating that the system that exists in Belgium encourages women to work and put their children into childcare rather than depending on their husband just in case the partnership falls apart.
It’s a bit of a tangent, but outside of medicine, I’ve never met anyone with a PhD who created anything
On the issue itself; Subsidies = cash, right? Why not make childcare tax deductible? “The people” abuse free cash just as surely as “the politicians.”
Wrong Chuck, in this case Subsidies does NOT= cash!
In Belgium is costs around €250 to send your child to a creche for the month, It costs this little as it is subsidised by the government. This is certainly the case in Kortrijk.
People pay a lot more tax over there alright but their system seems to work alot better than ours when you count in all the subsidies.
@ Lizzie
Clueless comments really.
Many countries subsidize child care, Belgium, Finland, Sweden, Germany, France and many others.
@ Chuck
“I’ve never met anyone with a PhD who created anything”
Astonishing. Who do you think develops pharmaceuticals? Medical devices? Computers? etc etc etc
“It’s a bit of a tangent, but outside of medicine, I’ve never met anyone with a PhD who created anything”
Read the 7th, 8th, 9th & 10th words there…….
I cannot believe it was only in 1990 that rape within a marriage was ok, if a guy had of tried it he would had swiftly got to meet my friend the baseball bat, I know some one who was raped within a marriage and it changed the person she was and the relationship she had with her child was destroyed
No offense to the Irish generation above me, but you guys have so much crap that you should be ashamed of. On a regular basis I’m thankful that I didn’t have to live into that kind of Ireland.
And in fairness I’ve little doubt the same applied to alot of other small countries too.
We still have a long way to go but we’re making progress.
don’t be so sure that the current generation is without it’s faults and skeletons in it’s closets.
It’s great for you to look back and say the past generations had so much crap but alot of this continous and people in their 20′s now are just as capable of doing the same stuff that people did 40-50 years ago and they do.
True, but at least now,with Internet, immigration and improves technology answer education we’re more influenced by the outside and don’t hold onto ideas and assumptions about how things should be as much.
But yea I’ve little doubt the next generation will look back at massive aspects of our lives and wonder “what the hell were they thinking “.
Adrian your living in a dream world with that reproachful look you throw at the past Irish, and the self congratulation of the present. It’s only because of outside influences that Ireland has OSTENSIBLY changed… the EU, internet and the piles of money invested here which allowed thousands travel and form their own identities free of toxic influences form the collective here.
Some things have changed, but we haven’t moved on that much as a nation, despite outside and technological advances. Still ruled by the corrupt, still women get less pay, less opportunites, still lots of pressure to conform, still poor people and the vulnerable are raped in many other ways then sexually,
and if you haven’t occassionaly fought to change the system that is here, you are just as guilty as anyone in the past. if you have, good on ya!
Well done to the women who have come forward with this story, hopefully you are healing now after all the abuse and shame on the men of this country who did this damage to there wives and families , thankfully we are a society who now can get help with most things and move forward……..well done to OWN try and keep going even though you have little funding .
Thumbs up if you blame the church!
What a dumb comment! Sigh….
I am ashamed of being a man
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