<p>
	Cystic Fibrosis Ireland (CFI) has reiterated its call to Government to swiftly conclude discussions with the manufacturer of a life-changing drug so that more than 500 patients can potentially benefit from the treatment.</p>
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	The plea came at the launch of CF National Awareness Week and nine months into the wait for a decision on whether the State will reimburse Vertex Pharmaceuticals for the cost of Orkambi, originally set at c&euro;159,000 per patient per annum.</p>
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	CFI is also hoping for a favourable decision on requests for an extension of the State&rsquo;s reimbursement of Kalydeco, another Vertex drug.</p>
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	It is reimbursed for CF patients aged six and older but campaigners are now calling for it to be available to children aged 2-5. However the National Centre for Pharmacoeconomics (NCPE) has already ruled this would not be cost effective.</p>
<p>
	CFI CEO Philip Watt said Orkambi and Kalydeco are &ldquo;well documented in increasing lung function and slowing progression of the disease, in decreasing hospitalisations and dependency on other medications, and in improving quality of life for a substantial number of patients&rdquo;.</p>
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	&ldquo;That is why we are calling on all sides to show generosity of spirit in quickly finalising a mutually-satisfactory arrangement,&rdquo; he said.</p>
<p>
	Mr Watt said CFI was also calling for an overhaul of the current drug approval system, without which future CF therapies would fall at the hurdle of cost-effectiveness. Earlier this month, Health Minister Simon Harris controversially and unsuccessfully asked CF campaigners to call off a planned protest outside the D&aacute;il on the grounds that talks with Vertex had entered a critical phase.</p>
<p>
	The Department of Health yesterday said it was &ldquo;expected this process will conclude in a period of weeks&rdquo;.</p>
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	Ireland has the highest incidence (per head of population) of CF in the world.</p>
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	&nbsp;</p>
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	(Published by the Irish Examiner on the 20th March 2017)</p>
<p>
	<a href="http://www.irishexaminer.com/ireland/cf-charity-renews-call-for-deal-on-life-saving-drug-445671.html">http://www.irishexaminer.com/ireland/cf-charity-renews-call-for-deal-on-life-saving-drug-445671.html</a></p>
