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What Is The Status Of Patient Access To Orphan Drugs In The UK ?

October 22, 2012

       An October 20, 2012, article titled, “Patients With Rare Conditions Face Postcode Lottery”, in the UK newspaper, The Guardian, discusses the status of patient access to orphan drugs in the UK.  The article says that “research shows that patients with rare conditions have less of a chance of accessing orphan medication if they live in England”. 

       Figures in a new report from the think-tank, 20:20 Health, show that patients with life-threatening rare diseases are denied orphan drugs because of a “postcode lottery across the NHS that campaigners say is frustrating and unfair”. 

        Here are several conclusions from the new report from 20:20 Health : 

1)  Patients with rare diseases have less of a chance getting access to orphan drugs if they live in England rather than in Wales or Scotland 

2)  The European Medicines Agency (EMA) has approved 68 orphan drugs 

3)  The National Institute for Health & Clinical Excellence (NICE) has assessed only 18 of these 68 orphan drugs. Of these 18, NICE recommends 7 become available on the NHS in England & Wales, and another 5 available under certain restrictions 

4)   The Scottish Medicines Consortium (SMC), NICE’s equivalent in Scotland, has examined 56 of the 68 orphan drugs. SMC made 14 available & 14 available under certain situations 

5)   The All Wales Medicine Strategy Group (AWMSG), NICE’s equivalent in Wales, has examined 51 of the 68 orphan drugs. AWMSG made 12 available & 9 available under certain situations.            

    Thus, 20:20 Health reports on the disparity between the countries in the UK, with the NHS providing an unequal service when it comes to orphan drug access. 

Copyright  © 2012-2013, Ann-Teresa Cusenza and Orphan Druganaut Blog.  All rights reserved.

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