<p>
	The campaign group for people with genetic emphysema is to meet the HSE today about the drug Respreeza.</p>
<p>
	&nbsp;</p>
<p>
	The Alpha One Foundation say they are devastated at the HSE decision not to fund the drug, which they say has been life-changing for people affected.</p>
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	&nbsp;</p>
<p>
	Seventeen people here have been getting the drug under a compassionate-use programme, supported by the makers CSL Behring.</p>
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	&nbsp;</p>
<p>
	Professor Gerry McElvaney, a respiratory consultant at Beaumont Hospital and who has been involved in the care of patients, said Respreeza works and reduces chest infections and hospitalisations in patients.</p>
<p>
	&nbsp;</p>
<p>
	However, the HSE has declined to fund the drug as it was not seen as cost effective at the original price sought by the firm and would cost over &euro;100,000-a-year per patient.</p>
<p>
	&nbsp;</p>
<p>
	It also says there are clinical effectiveness issues.</p>
<p>
	&nbsp;</p>
<p>
	The drug makers say they will continue to supply the drug on compassionate grounds for two more months, to allow for talks with the State.</p>
<p>
	&nbsp;</p>
<p>
	The company has told RT&Eacute; News that it has provided the drug under the compassionate-use programme in the hope of a decision by the HSE for overall funding.</p>
<p>
	&nbsp;</p>
<p>
	It said that the final price offered to the HSE was the lowest viable price and significantly lower than the price already accepted in many other European countries.</p>
<p>
	&nbsp;</p>
<p>
	It had set a deadline of 28 February at which stage the provision of the drug would cease but this has been extended.</p>
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	&nbsp;</p>
<p>
	(Published by RTE.ie on the 23rd February 2017)</p>
<p>
	<a href="https://www.rte.ie/news/2017/0223/854793-campaigners/">https://www.rte.ie/news/2017/0223/854793-campaigners/</a></p>
