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THE GOVERNMENT HAS been advised not to purchase a ‘groundbreaking’ new drug to treat cystic fibrosis, after a national assessment deemed the treatment too expensive.
The National Centre for Pharmaeconomics at St James’s Hospital said the newly-developed drug Kalydeco - or Ivacaftor, as it is also known – was too expensive at the current cost of €234,804 per patient per annum.
It outlined that, at the current cost, the purchase of the drug would pose a “significant budget impact” to the State, at a cost of over €28 million each year – or 40 per cent of the funding available for all new drug treatments.
The report suggests that the manufacturer of the drug, Vertex Pharmaceuticals, should reduce the price. It also recommended the company and the Government engage in a risk-sharing scheme whereby the State does not pay for a treatment that is shown to be ineffective.
Kalydeco was approved by European regulators in July 2012 and submitted for consideration by the Irish Government in August.
Kalydeco has been hailed as a breakthrough treatment for those suffering from a particular form of cystic fibrosis known as G551D - or the ‘Celtic gene’. An estimated 1,100 people in Europe have the G551D mutation, with about 100 of those living in Ireland. The drug has been shown to improve the breathing of G551D sufferers, as well as helping them to gain weight.
Philip Watt, CEO of the Cystic Fibrosis Association of Ireland (CFAI), told TheJournal.ie that he was not surprised by today’s news. “It’s what we predicted,” he said. “The HSE is now going to negotiate the price, which is standard procedure for drugs of this type”.
Watts urged the HSE and Department of Health to secure a “fair price” for the drug, which he described as a “game changer” for those living with G551D.
“The bottom line is, our patients need this drug as soon as possible,” he said.
Watt noted that the CFAI had flagged the cost of the drug following its approval by European regulators and had expected negotiations over price, but pointed out a number of factors which had led to the current pricing: as well as the cost of research and development of the groundbreaking treatment, the manufacturer could only expect a relatively low return from Irish distribution due to small numbers of patients in the country, he explained.
There are 1200 CF patients in Ireland – which is the equivalent of 4 per cent of the worldwide CF population – and, of those, 10 per cent would benefit from the treatment, Watt said.
However, those who treated with the new drug have benefited “enormously” and, as such, Kalydeco pointed towards a brighter future for research into CF treatments, he added.
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Party based voting is a perversion of the democratic process. It should be illegal to force a TD to vote a certain way. They are supposed to represent their constituents views.
They are elected on a party platform as opposed to their own views. Therefore its reasonable to assume that most people voting for them are also voting on the party platform. It would then be wrong for them to suddenly decide that they don’t want to represent that platform. If that’s what they want they should go as an independent before the electorate.
There’s nothing wrong with party based voting, per se. It’s party based speaking time in the Dáil that’s the problem. The smaller your party, the less time you have to speak. If you’re an independent, you’re screwed unless you put together a technical group.
Is the catholic church or the government running this country ?
Or in other words ‘Is the catholic church or the government RUINING this country?
We have no idea how much the catholic church runs the government. Any politician that is catholic could face excommunication on these matters. Thats the gun being held to their head.Do we really want to live in a state run by an organisation without credibilty. This is a fight to the death for the catholic church. They see their power slipping away.
Since all the Sunday collections have nearly stopped the Fs (FG/FF) have directed larger amounts of tax payers money into church controlled charities (Ruhama, Immigrants Council of Ireland…).
Those charities in turn use their citizen paid PR departments to push church policy from an ‘independent’ advocacy position. The local TD gets to cut the ribbon at the next charity event, they get elected for ‘doing good for the community’ (non-church groups don’t have a chance) with the aid of the few votes the church can muster.
The whip ensures that there is no free vote and the church/government policy/finance/vote loop is closed.
There should be no obfuscation or waffling on this matter. We need to legislate with safeguards for all. Its a disgrace that we have, after all this time, exported our problems abroad as if it never happens. Typically Irish solution to an Irish problem, stick our heads in the sand and hope it goes away. We need “Savita” legislation now.
We need to legislate with safeguards for all…………………what in all that’s holy could this mean?
Meanwhile over 4,000 women still travel to the UK, it’s really time we face the reality instead of continuing to stick our heads in a sandbox
Another insult to our intelligence by the masters, Fine Gael. They haven’t the nerve to vote as a party on the matter after Savitas death,so are hoping to weasel around it with a free vote.
Don’t believe me? Where was Shatter calling for a free vote back in April on the same matter?
“an insult to our intelligence”…….mmmmmmm?
Has the Dáil ever had a free vote recently, it must be one of the world’s most whipped parliaments.
Any TD who votes no is blocking the democratic will of the people. No TD should even countenance voting no.
In terms of abortion in general, I don’t think parties should have policies other than a commitment to hold referenda or not. That said, every candidate should state the way they would vote on such matters before the election.
Dame Edna has said NO.
A free vote for all TDs is essential. Otherwise we will have a dictatorship headed by Dictator Enda!
Some say that the Supreme Court decision on the X case is probably incorrect and unconstitutional. If true why has the Expert Committee of Advisers not recommended a review of the X case before recommending legislation.FG gave a or election commitment that it would NOT legislate for abortion.It is now doing so. FG has adopted the policies of the Labour Party on abortion. If the government do not reassess its position FG will be wiped out at the next election. Remember the VAT on children’s shoes! Sad!
have your say