<p>
	Taoiseach Enda Kenny has accused the maker of a life-saving cystic fibrosis drug of &ldquo;ripping off the taxpayer&rdquo; amid growing concern over the &ldquo;excessive&rdquo; price tag it is demanding.</p>
<p>
	&nbsp;</p>
<p>
	Mr Kenny made the claim as he said the Government is willing to enter negotiations with the pharmaceutical firm involved to ensure patients are able to access the medication &mdash; if the company agrees to significantly lower its price.</p>
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	&nbsp;</p>
<p>
	Speaking during D&aacute;il leaders&rsquo; questions, Mr Kenny repeatedly came under fire from Fianna F&aacute;il leader Miche&aacute;l Martin and Sinn F&eacute;in leader Gerry Adams over the controversy surrounding the cystic fibrosis drug Orkambi.</p>
<p>
	&nbsp;</p>
<p>
	Despite being proven to save lives, the drug is not available publicly in Ireland as its maker Vertex wants the State to pay it &euro;160,000 a year for every person they help instead of the &euro;30,000 HSE recommended figure.</p>
<p>
	&nbsp;</p>
<p>
	Addressing the issue in the D&aacute;il, Mr Kenny said Vertex was &ldquo;ripping off the taxpayer&rdquo; by demanding the price must be paid if Irish patients want to get the drug.</p>
<p>
	&nbsp;</p>
<p>
	Insisting that the US-based pharmaceutical firm is failing to put the lives of people before its own profits, he said the Government fully supports the HSE&rsquo;s view that the &euro;30,000 figure is appropriate.</p>
<p>
	&nbsp;</p>
<p>
	&ldquo;Vertex are ripping off the taxpayer here. It is not a political process that determines the value and the impact of the drug, that has been decided by those qualified in clinical practice.</p>
<p>
	&nbsp;</p>
<p>
	&ldquo;Clearly, this company are using cystic fibrosis patients to say we have a drug that enhances your quality of life, but the charge being put forward by the company is grossly excessive.</p>
<p>
	&nbsp;</p>
<p>
	&ldquo;The clinical person in charge of this [for the HSE&rsquo;s pharmaco-economics group, Prof Michael Barry] has been very clear on this.&rdquo;</p>
<p>
	&nbsp;</p>
<p>
	The position was heavily criticised by Miche&aacute;l Martin, who said it was vital Mr Kenny ended the &ldquo;Mexican stand-off&rdquo; between the Government and Vertex for the benefit of patients whose lives are at risk.</p>
<p>
	&nbsp;</p>
<p>
	Urging the Taoiseach to &ldquo;ensure there are negotiations&rdquo;, he said while the &ldquo;easiest thing to do is attack big bad pharma, it doesn&rsquo;t resolve this&rdquo; and that &ldquo;nobody believes&rdquo; the &euro;30,000 HSE figure is credible.</p>
<p>
	&nbsp;</p>
<p>
	&ldquo;This hasn&rsquo;t been handled well, it is not good enough. You can&rsquo;t get a deal if it&rsquo;s just hostility and bad blood on both sides,&rdquo; he said.</p>
<p>
	&nbsp;</p>
<p>
	After similar concerns were raised by Mr Adams, who said the Government &ldquo;knows the price of everything and the value of nothing&rdquo;, Mr Kenny said he continued to believe Vertex was &ldquo;ripping off&rdquo; the State.</p>
<p>
	&nbsp;</p>
<p>
	However, he added that if the company is willing to reduce its price, the Government will negotiate in a bid to secure the lifesaving drug for the 500 people in Ireland with cystic fibrosis.</p>
<p>
	&nbsp;</p>
<p>
	&ldquo;Prof Barry pointed out that in his view Orkambi is not cost-effective at almost &euro;160,000 per patient per year, he estimated the cost at &euro;30,000,&rdquo; said Mr Kenny.</p>
<p>
	&nbsp;</p>
<p>
	&ldquo;There is a big difference. If they [Vertex] are willing to come down from &euro;160,000 a year, let&rsquo;s see what they&rsquo;re talking about.&rdquo;</p>
<p>
	&nbsp;</p>
<p>
	Taoiseach Enda Kenny has accused the maker of a life-saving cystic fibrosis drug of &ldquo;ripping off the taxpayer&rdquo; amid growing concern over the &ldquo;excessive&rdquo; price tag it is demanding.</p>
<p>
	Mr Kenny made the claim as he said the Government is willing to enter negotiations with the pharmaceutical firm involved to ensure patients are able to access the medication &mdash; if the company agrees to significantly lower its price.</p>
<p>
	Speaking during D&aacute;il leaders&rsquo; questions, Mr Kenny repeatedly came under fire from Fianna F&aacute;il leader Miche&aacute;l Martin and Sinn F&eacute;in leader Gerry Adams over the controversy surrounding the cystic fibrosis drug Orkambi.</p>
<p>
	Despite being proven to save lives, the drug is not available publicly in Ireland as its maker Vertex wants the State to pay it &euro;160,000 a year for every person they help instead of the &euro;30,000 HSE recommended figure.</p>
<p>
	Addressing the issue in the D&aacute;il, Mr Kenny said Vertex was &ldquo;ripping off the taxpayer&rdquo; by demanding the price must be paid if Irish patients want to get the drug.</p>
<p>
	Insisting that the US-based pharmaceutical firm is failing to put the lives of people before its own profits, he said the Government fully supports the HSE&rsquo;s view that the &euro;30,000 figure is appropriate.</p>
<p>
	&ldquo;Vertex are ripping off the taxpayer here. It is not a political process that determines the value and the impact of the drug, that has been decided by those qualified in clinical practice.</p>
<p>
	&ldquo;Clearly, this company are using cystic fibrosis patients to say we have a drug that enhances your quality of life, but the charge being put forward by the company is grossly excessive.</p>
<p>
	&ldquo;The clinical person in charge of this [for the HSE&rsquo;s pharmaco-economics group, Prof Michael Barry] has been very clear on this.&rdquo;</p>
<p>
	The position was heavily criticised by Miche&aacute;l Martin, who said it was vital Mr Kenny ended the &ldquo;Mexican stand-off&rdquo; between the Government and Vertex for the benefit of patients whose lives are at risk.</p>
<p>
	Urging the Taoiseach to &ldquo;ensure there are negotiations&rdquo;, he said while the &ldquo;easiest thing to do is attack big bad pharma, it doesn&rsquo;t resolve this&rdquo; and that &ldquo;nobody believes&rdquo; the &euro;30,000 HSE figure is credible.</p>
<p>
	&ldquo;This hasn&rsquo;t been handled well, it is not good enough. You can&rsquo;t get a deal if it&rsquo;s just hostility and bad blood on both sides,&rdquo; he said.</p>
<p>
	After similar concerns were raised by Mr Adams, who said the Government &ldquo;knows the price of everything and the value of nothing&rdquo;, Mr Kenny said he continued to believe Vertex was &ldquo;ripping off&rdquo; the State.</p>
<p>
	However, he added that if the company is willing to reduce its price, the Government will negotiate in a bid to secure the lifesaving drug for the 500 people in Ireland with cystic fibrosis.</p>
<p>
	&ldquo;Prof Barry pointed out that in his view Orkambi is not cost-effective at almost &euro;160,000 per patient per year, he estimated the cost at &euro;30,000,&rdquo; said Mr Kenny.</p>
<p>
	&ldquo;There is a big difference. If they [Vertex] are willing to come down from &euro;160,000 a year, let&rsquo;s see what they&rsquo;re talking about.&rdquo;</p>
<p>
	&nbsp;</p>
<p>
	Mother&rsquo;s plea: I don&rsquo;t want to bury another child</p>
<p>
	A mother has made an emotional plea outside Leinster House for her teenage son to be given a groundbreaking drug to treat cystic fibrosis.</p>
<p>
	&nbsp;</p>
<p>
	&ldquo;I do not want to bury another child,&rdquo; said Phil Dunphy, from Rathangan, Co Kildare.</p>
<p>
	&nbsp;</p>
<p>
	Ms Dunphy&rsquo;s daughter, Sarah, a law graduate, was just 23 when she died in March 2014. She was considered a suitable candidate for Orkambi but did not get it.</p>
<p>
	&nbsp;</p>
<p>
	&ldquo;Sarah has a younger brother, Shane, aged 19, who needs Orkambi. I want that opportunity for him. I do not want to bury another child,&rdquo; said Ms Dunphy.</p>
<p>
	&nbsp;</p>
<p>
	She had joined hundreds of protesters outside D&aacute;il &Eacute;ireann to express their frustration and upset about the delay in securing approval for the drug.</p>
<p>
	&nbsp;</p>
<p>
	Around 550 people with CF would be eligible for the therapy if reimbursement was approved in Ireland.</p>
<p>
	&nbsp;</p>
<p>
	The drug manufacturer, Vertex Pharmaceuticals, initially sought &euro;159,000 per patient per year but claims it has substantially reduced its asking price in talks.</p>
<p>
	&nbsp;</p>
<p>
	Health Minister Simon Harris, issued a statement last night saying he was pleased that Vertex had told the HSE it wanted to restart drug price negotiations.</p>
<p>
	&nbsp;</p>
<p>
	Mr Harris said Vertex must return to the table with a &ldquo;significantly&rdquo; better offer. However, he was pleased that negotiations would start again.</p>
<p>
	&nbsp;</p>
<p>
	The minister attended a meeting of EU health ministers in Lisbon yesterday on drug price negotiations.</p>
<p>
	&nbsp;</p>
<p>
	During the meeting he raised the &ldquo;unacceptably high price&rdquo; Vertex had put on Orkambi, making it inaccessible, not just for Ireland&rsquo;s CF patients but for other patients around Europe.</p>
<p>
	&nbsp;</p>
<p>
	&ldquo;I want to see CF patients receive access to the best treatments possible. That remains my priority,&rdquo; he said.</p>
<p>
	&nbsp;</p>
<p>
	The protest outside Leinster House was organised by Jillian McNulty from Longford, who has CF and is receiving Orkambi as part of a clinical trial.</p>
<p>
	&nbsp;</p>
<p>
	About 40 people with CF in Ireland are receiving the treatment as part of a trial or compassionate use programme.</p>
<p>
	&nbsp;</p>
<p>
	Ms McNulty&rsquo;s brother, Derek, also had CF. He was just five years old when he died in 1975.</p>
<p>
	&nbsp;</p>
<p>
	Ms Dunphy said her daughter, Sarah, should have been given the same opportunity as Ms McNulty to have the treatment.</p>
<p>
	&nbsp;</p>
<p>
	&ldquo;She wasn&rsquo;t, and she&rsquo;s gone,&rdquo; she said.</p>
<p>
	&nbsp;</p>
<p>
	Ms McNulty said she had campaigned for the past two years for people like her to be able to get Orkambi. It had transformed her life.</p>
<p>
	&nbsp;</p>
<p>
	&ldquo;If we do not have word by January we will stage another protest then. We will get Orkambi and our tears then will be tears of joy.&rdquo;</p>
<p>
	&nbsp;</p>
<p>
	Protesters left purple roses outside the D&aacute;il.</p>
<p>
	&nbsp;</p>
<p>
	(Published by the Irish Examiner on the 8th December 2016)</p>
<p>
	<a href="http://www.irishexaminer.com/ireland/orkambi-controversy-maker-of-cystic-fibrosis-drug-ripping-off-taxpayer-434199.html">http://www.irishexaminer.com/ireland/orkambi-controversy-maker-of-cystic-fibrosis-drug-ripping-off-taxpayer-434199.html</a></p>
