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THE HEAD OF the National Centre for Pharmacoeconomics (NCPE) has said that the cystic fibrosis drug Orkambi does not represent value for money and should not be funded by the Government at its current cost.
Speaking today on RTÉ’s Morning Ireland, Professor Michael Barry of the NCPE said that Orkambi costs too much and wasn’t effective enough to be financed by the HSE.
The NCPE advises the HSE’s drugs group on the economic viability of pharmaceutical medication.
The news broke yesterday that the HSE was going to reject the use of Orkambi, a drug that has transformed the lives of some people with CF.
The HSE has been in talks with the drug’s manufacturer, Vertex Pharmaceuticals, in a bid to reduce its cost, for several months.
Yesterday the Sunday Business Post reported that the HSE’s drugs committee will recommend against funding the medication.
In a letter to Philip Watt, CEO of CF Ireland, Health Minister Simon Harris yesterday said he has not yet received a decision from the HSE regarding Orkambi.
Professor Michael Barry said today that that was also his understanding of the issue.
“The HSE executive has to receive the recommendation from the drugs group and I know that the HSE executive hasn’t made a decision as to whether a drug will or will not be made available,” he said.
However, Barry – who is also on the HSE’s drugs group – said that the group was sticking with its earlier recommendation that the drug “was not value for money”.
He said Orkambi – which can greatly alleviate the symptoms of CF – was not value for money because of its “inherent efficacy”.
He said the drug – which currently costs about €160,000 per patient per year – would only work for about 25% of patients.
“You’re being asked to pay a really high price for a drug which won’t work in a lot of people,” he said.
We did say in our report that we felt the price would have to fall to about €30,000 per patient per year to render it value for money.
Funding
Barry said that ways around combatting the high price could include a “risk sharing” approach between the HSE and the drug manufacturer.
This is where an agreement could be reached whereby every patient who needs the drug receives it and the HSE would pay in the cases where the drug is effective.
Orkambi manufacturer Vertex said that it had engaged in a meaningful way with the HSE to try to reach a funding agreement, however Barry said this was not the case.
“It’s true they’ve engaged. I think they could have engaged in a more meaningful way,” he said.
I think to be honest we need to be very frank about this that Vertex needs to put patients first and the well-being of shareholders second.
The expected HSE decision not to fund the drug has been met with strong criticism from CF support and advocacy groups.
In a statement, CF Ireland said it “will fight this decision” and is “angry at the cynical way the HSE has conveyed this information to our patients, some of whom are very ill”.
Barry said he believed the drug could be funded eventually but that Vertex “needed to come to the table” with a viable offer.
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Money, the root of it all. Imagine how far along as a society we would be if we did things for the betterment of our species and the planet rather than the pursuit of profit and power.
Not very far I’d imagine… something has to be the motivational force for the development of safe and effective drugs.
But for the chance to recoup that cost they would not exist and the diseases would be fatal/untreatable.
I would like to think that the health and happiness of young people (and people in general) would be motivation enough.
And what about the other young person that may have to go without the life saving surgery. There is no easy answer in Pharmo economics. One thing is that we cannot exponentially spend on drugs. Then again this is no consolation for CF sufferers
Think that all the way through and if you would be happy to do your job without compensation for the health and happiness of others…
Unless you’re of substantial other means to support yourself and philanthropic in nature, I doubt so…
That’s one way of putting a price on someone’s life…
Unfortunately goodwill doesn’t pay for researchers, equipment, clinical trials etc.
I have to admit that I was shocked to see that two tablets per day cost €438 per patient! My first thought was that Vertex the company which created the drug, must be cynically exploiting this individual suffering and making a fortune in the process. After some online research I was surprised to see, that vertex had only posted a profit once since it was founded in 1989, maybe I was wrong in my first conclusion. However a little more research revealed that many involved in the company had made massive personal fortunes, and the company which is traded on the stock exchange once increased in value by $6 Billion in a single day. It seems on reflection that posting a profit or not doesn’t really give an indication of the money actually being made in this instance and that my first thought may be closer to the truth.
Did you research the cost of developing, testing and putting the drug through clinical trials by any chance?
@David Van-Standen:@David Van-Standen: best response here. This is the kind of information that should have been included in the article as the cost of the drug seems extortionate
Who cares what people make off the back of it ? If it improves or saves people’s lives then surely it is worth it. Listened to a few people suffering from CF and a father of a baby with it. All now resigned to a death sentence because of this decision. How dare our government say it is too expensive to save a life. Sickening. Was hard to here a father admitting that his baby had now been given a death sentence because of a cost the government are refusing to pay for. They have no problems paying out for plenty of sh*te that won’t save or change people’s lives.
Let me suggest an alternative… CF is a straight forward inherited condition from carrier parents… a CF genetic screen costs approx €200, approx 200 babies born a day in Ireland. To screen each of their parents would cost less than €15 million.
Life expectancy of CF sufferers is 37 for those that live into adulthood. So the cost to treat 1 single person for life is almost €6.
Yes I did, did you? Here is a link the most recent available information from the company. http://investors.vrtx.com/releasedetail.cfm?ReleaseID=949601
@David Van-Standen: big pharma more interested in profits than cures shocker
Ultimately it’s a political choice to allow CF patients to suffer and die. Not an unfortunate economic limitation.
A shortage of money is the justification always given by the capitalist class and their political enablers for gutting the living standards of the working class through eroded social supports like health and education, privatization of collective resources and of course poor wages and working conditions.. This is risible nonsense. There can never be a shortage of money at a macro level. Nations spend their own currency into existence at will and then tax it back out of circulation in a continuous flow. Commercial banks create new money in the form of bank deposits when they issue loans and the money is taken out of circulations as the loans are repaid.
Money is just as tool of the state which issues the currency and is used to measure and allocate those real resources produced by society collectively. If this was generally understood then the huge power and influence of private capital would be fatally undermined and this is why they go to great lengths to peddle their misinformation on the nature of money and the macro economy.
The fact is we should not be depending on profit gouging entities like Vertex to supply the population with life saving drugs. The nation states have all the money they ever need to develop these drugs themselves. It’s only ever a question of real resources such as scientific professionals, equipment, materials etc.
When the profit motive is taken from the equation, the possibilities for human advancement are vast.
@Sinead and anyone else that be belives the R&D cost argument, here is a link to a rather long and detailed article which shows just how false that argument is and explores the truth behind pharmaceutical pricing. It’s not on some moaning left wing conspiracy page either, it’s on forbes. com and is a very enlightening read. http://www.forbes.com/sites/matthewherper/2015/10/13/four-reasons-drugs-are-expensive-of-which-two-are-false/#60b1db5c48a5
Unfortunately the health service has finite resources, and if you pay extortionate prices to drug companies for certain drugs, then other drugs and service will be affected leading to more deaths and suffering. Maybe if we reduced doctors, nurses and administrators salaries & reduced the waste in the system. Then come up with a proper sustainable funding model for the Health Service, we would have more resources and money to allow us to provide a proper healthcare for all our citizen. But that’s never going to happen.
Reduce nurses money ? It’s crap as it is. Junior doctors get less than Luas driver ffs. Thats a great idea. They would all end up going abroad and we would end up with none.
@Paul O Mahony: maybe junior Doctors, but our consultants are some of the highest paid in the EU, then if you are to look at what they earn in their private practices.
We need to radically overhaul our health system, and that’s not going to happen.
Agree but there are far fewer consultants than on the ground doctors. To say to cut all there money is ludicrous. End of the day or government has put a price on people’s lives. That to me is wrong. To here a man on the radio Saturday talking about how this is his child’s death sentence was horrible. There is plenty of more things that could be cut back on to help save these people’s lives.
Disgusting. They really don’t give a shit about the people as long as they can line their own pockets they’re happy eith themselfs
If we had an unending money pot you may have a point. As it stands we don’t though, so as a society we charge people with the responsibility for deciding how the money is best spent to maximise overall benefit. This inevitably means having to make some extremely difficult and harsh decisions. Do you think they get a sick pleasure out of making a decision like this?
But yet the nonexistent money pot will always find money for TD And ministerial pay hikes.Funny that.
Raymond, it’s a nice romantic notion that politicians would not get paid a high salary but that is in fairy land only. It’s very easy to pull on the heart strings and say lots, for example surely you would be happy to pay an extra few thousand per ear tax for the CF sufferers?
Unfortunately we must put a price on drugs and the value received.
Sorry John but it’s not a question of extra tax but a priority of allocated resources.politicians salary increases may make a small difference but it’s a good and symbolic start.I’d rather see 5 kids get the benifit than TDs and cabinet
Raymond, but if you are asking TDs to contribute more, why won’t you pay extra tax? You are correct, it is not a case of extra tax, or reducing politicians pay, it is a matter of setting a Heath budget and using that in a way to maximise the health of the nation. If a new super expensive drug comes out, it’s an easy and populist statement to say you can’t price a life, but we must.
How much spuld politicians be paid. More or less 7 days a week. Unsocialable hours, little to no job security, difficulty in raising a family. Bend your knee to 10k voters. Always nswer your phone. Have pur private clinic. Beg ppl to keep your job.
€160,000 per year, what’s the betting that’s less than his salary.
Yea , God forbid one of his own children had this illness and see if it was with it or not, muppet
‘It doesn’t represent good value for money’ to save your dying child. -HSE.
I pay privately for a drug not approved by the HSE or NHS/NICE. Costs €22k a year currently. Not something I like having to spend, but needs dictate.
The choice as a society is between funding an extra 80,000 medical cards per year or paying for Orkambi for approximately 500 people. Only a quarter of these people will benefit at all and the benefits for these 125 or so are limited. A substantial reduction in symptoms but not a cure. There is an opportunity cost for every decision. Whether people like it or not, you can and must put a price on lives so that scarce resources can be used to produce the greatest possible benefit.
They don’t suffer from CF so that makes it ok. What a wonderful country.
To be fair, it’s the drug company’s morals that should be called into disrepute.
The cost for developing a drug are substantial whether the drug will treat 1 person or 1 million. If there was no profit to be made then no-one would invest the money in developing the drug in the first instance. Bear in mind much of that money goes into paying for clinical trials to prove the drug is safe and effective so its not like they can minimise that part of the process. There’s also no guarantee that the drug WILL be either safe or effective so they have to spend the money on the trials to find that out. Its an unfortunate fact of medicine.
If we stopped overpaying for off patent and generic drugs we’d free up much of the cash to be able to afford new drugs like this.
vulture funds paying little or no tax whilst raking in billions from the Irish property market and we have no money for Cf drugs….a national disgrace,an embarrasment
Fg/Ff should be asked to explain their refusal to close tax loopholes for vulture funds.
If gov buy other drugs off vertex,change companies.see what they say.
Why is it that expensive? Am I being completely stupid and missing something? What’s the fcucking point discovering new ways of helping sicknesses if it’s so overpriced they can’t be used. Is it just greed by pharmaceutical companies?
I wonder if he calculated the cost of medical care over the lifetime of a patient with cystic fibrosis would there be much difference.
We have the highest incidence of CF in the world which makes it very expensive for us as a country.
It’s a big earner for pharma and makes you wonder what the cost to the consumer if anyone discovers a cure for hiv.
Would it be value for money if one of our completely useless, self important politicians needed it?
If you visit the company’s website you are struck by how ‘distracted’ they are from their core mission of making drugs and making those drugs available. They could do with a bit of training in lean manufacturing.
What a tough job, to make a decision based on all the clinical facts that could easily damage someones quality of life, or even condemn them to death. And on the other hand they make that decision and have no money to help someone else. I’m glad I’m not in that position.
If a ministers child had this disease we would not be discusing this…….and thats a fact
Why? How would they influence the decision?
Worth it
How much are they paying for the junkies????
If it even saved one life, it’s value for money, throw money at other things that are not worth a shit and wasting it
have your say