Earlier today.
Outside Leinster House.
Members of Cystic Fibrosis Ireland, people with CF, and their supporters, held a protest calling on the Government to urgently approve CF drugs Orkambi and Kalydeco.
Meanwhile…
Inside the Dáil…
During Leaders’ Questions, in response to a question from Fianna Fáil leader Micheál Martin, Taoiseach Enda Kenny said:
The Minister for Health, Deputy Simon Harris, met personnel dealing with cystic fibrosis during the week. Deputy Martin is accurate when he states that Orkambi is a drug that impacts on the quality of life of a patient with cystic fibrosis, but it is not the Minister who determines the value of that quality of life or how it is measured. In this case, it was done by Professor Barry, who has commented on this issue in the past.
The Minister for Health has had to shift the emphasis to major pharmaceutical companies so that there is an understanding that there is a limit to how far one can go in getting the balance between having that quality of life for cystic fibrosis sufferers and having the taxpayer pay the exorbitant amounts of money being demanded in respect of the drug.
It is true that Vertex [pharmaceutical company] has made an offer. However, the Minister is trying to bring about a situation where we are not going from year to year uncertain about what the future holds for any category of patients. In this case, it is cystic fibrosis sufferers. That is why the Minister wants to do a deal with the companies in respect of Orkambi, Kalydeco and any other future drug that may be beneficial to the quality of life of cystic fibrosis sufferers.
He is right in that regard because we do not want a situation where Orkambi, for instance, is being made available to patients at a certain price based on the improvement in their quality of life and find that the situation changes six months or 12 months down the line.
The Minister is putting together a future certainty for cystic fibrosis sufferers to deal with a pipeline of drugs, be those drugs Orkambi, Kalydeco or new drugs that come on the scene, which happens every year. I expect that the Minister will be able to conclude his deliberations inside a couple of weeks and bring about certainty for all the cystic fibrosis patients in the country of whom we have many of them, and more than most other countries.
This will give a certainty to those cystic fibrosis sufferers, whether it is in terms of Orkambi, Kalydeco or new pipeline drugs that may come on the market to treat cystic fibrosis. It is a good thing to do and the right way to go and I hope that, when it is reached, the decision will provide certainty for those with cystic fibrosis in the country.
Transcript: Oireachtas.ie
Related: Taoiseach expects deal on CF drug Orkambi in coming weeks (Irish Times)
Pics: CF Ireland
Have the two ladies with the banner dyed their hair purple for the cause or….?
Stop trying to draw attention to yourself, you Sap.
Yeah, yeah, yeah… you got your haircut.. Nobody cares.
It was long overdue.
Just shut up about it.
“Stop trying to draw attention to yourself, you Sap.”
* irony meter explodes *
Very childish of you to be resorting to name calling.
I never indulge in name calling and I’m not going to make an exception for a lonely, drunken, desperate old fool like you.
Go and harass your home help, I’ve got work to do.
Iv always wondered why the government does not set up a dedicated lab and just pay, even way way above normal salary, to or best and brightest to work on stuff like this so long term down the road the government(so the people) would own the drugs.
Because that would be proactive and makes sense.
We don’t like that here.
I think it would violate EU competition laws
Also, developing a drug costs billions upon billions of euro; can you imagine how much waste there would be if this was done by the public sector?
I know the cost would be crazy but that’s why it would have to be a dedicated section just for this. With actual accountability. But long term, years if not decade or more, the cost would look cheap. Im all for cutting cost if it can be done but no one should be left to slowly deteriorate till death just because of the cost of a drug. So surely if a country could own the drug it would pay for its self long term.
it may work as an EU-wide operation. But as Rob_G says it would probably breech EU competition laws
it doesn’t cost billions and billions to develop a drug..and it’s not against EU competition laws for the state to sponsor or develop a drug themselves.
You just make stuff up as you go, you really do.
billions yes, when you take into account all of the research and drugs that just don’t work, development doesn’t have anything like a 100% success rate.
Plus the years spent testing afterwards…
Average cost of getting a drug to market is $2.6 billion. Can be as high as $5bn or $6bn.
http://csdd.tufts.edu/news/complete_story/tufts_csdd_rd_cost_study_now_published
I don’t know I bother sourcing links for you; you never do for any of your grand pronouncements.
Eh excuse me I’ve been accused of linking too much.. Pharmaceutical companies are making billions upon billions..and it doesn’t cost billions to develop a new drug. I’ll look into it further. But my own view would be that ethically they have a responsibility to make less profit on the drugs required for less common diseases, from the huge profits they make from the widely used drugs.. not sure how that regulation could be enforced..but it could. They are raking it in.
“…and it doesn’t cost billions to develop a new drug”
well, I’m sure that you know better than the researchers at Tufts, Anne.
Raking it in Rob..raking it in
They’re called universities, every government has them. The question is why those universities and all the public money going into SFI/ERC/IRC etc is not used as you suggest and instead mini ‘spin-off’ companies are created through the universities to ready the newly invented drug for market at which point a big pharma company comes along and helps with the oh so difficult manufacturing and supply chain aspect of a giant drug dealing empire.
Okay, boys and girls…
Lets pretend for a moment that you’re all scientists of some sort or another.
You have all your certificates and your qualifications that your Mammy and Daddy paid for.
– Who do you want to work for…. The corrupt Multinational Corporation or the corrupt government?
It’s a tough one, isn’t it?
Easy, whoever pays most. That was a stupid question.
And…
What do all the people with the clever answers do after they watch all the scientists queuing up for application forms outside all the Big Pharma buildings, and not doing the ‘right’ thing that I think they thought they might do?
It’s a conundrum Anomanomanom, ammirite?
Your not wrong.
Excusé moi… bit of a 1980s Flashback there. This is good acid.
You should go to bed. Stop letting them rile you up with their stupidity.
You’re probably right, but wait a minute…
Rather than protesting that the government, why not protest outside the pharmaceuticals who are charging such unbelievable prices?
if you develop a drug for, say, high blood pressure, there is a potentially 75 million Americans that may need it. If you develop a drug for Cystic Fibrosis, you are talking about 30,000 Americans.
So the development and testing of the first is spread across millions of people. The second is across thousands.
This is one of the reasons that ‘specialist’ drugs are so expensive.
Raking it in.. the profits from the widely used drugs compensate for the lesser profit of the less commonly used drugs.
There’s no money in cures btw.
could compensate i meant
Hmm… Seems you can put a price on a life.
Well that would depend on whos life it is
yes you need to put a price on life. If the HSE have an annual budget of, say, €100,000,000 for drugs. Should they spend €250,000 each on 400 people (and improve their live quality by 30%)? or €10,000 on 1,000 people (which only improves their live quality by 15%)? Or perhaps they should spend it on a new Children’s Hospital?
This is real. Someone has to make decisions like this. And while it may seem callous, there isn’t limitless money, so some form of price-on-life calculation needs to be done.
+1
Horrific decisions to be faced with
Not when it’s ripping off the taxpayer with massive discounts to vultures through NAMA though.
So you think NAMA ‘ripping off the taxpayer with massive discounts to vulture’ is bad, but Vertex Pharmaceuticals ripping off the taxpayer with massively inflated drug prices is good?
Where is your consistency?
eh i never said that..learn to read the words in front of you.
Drug companies typically spend 10% to 14% of gross revenue on R&D, according to Drug Discovery, from Bedside to Wall Street; various drugs were never patented, including Tylenol. The Irish inventors of a drug for leprosy felt it would be immoral to profit from their patent, so sold the patent for buttons to India, which then was the world epicentre of leprosy; millions of lives were saved. Lifesaving drugs don’t have to be a source of profit for companies and shareholders. There is another way.
Drug companies could develop antibiotics to almost any known strain with a year. It would then start trials and be on the market a few years later. This process costs millions, however once you create the drug the clock is ticking. You may or may not recoup the cost.
Drug companies are not evil, for every drug that gets to market there are several that don’t. They have a limited window, before patents expire or better drugs come along, and a lot of people want to get paid.
Ohkaaaay…so this is not Harambe’s brother.
Best of luck wth the campaign.