cimorene

Text of the request from

smallbeer: Put on your Batman capes, because there's justice to be done:

http://pnhlondon.wordpress.com/

That blog belongs to a UK citizen who has a rare, chronic and severely debilitating illness, PNH. Recently, a drug was developed that will allow people who suffer from this condition to manage their symptoms and live relatively normal lives. The drug has been approved for use in the UK (as well as many other countries), but the small number of UK patients who need it and who went through the lengthy drug trial to test it are in imminent danger of being denied access to the drug because it's expensive. Details about PNH, its effects and the changes that this medication brought about in the lives of people taking it are in the linked post.

If you are a UK taxpayer, please take a moment to sign the online petition:

http://www.gopetition.co.uk/online/20877.html

And then please take a moment to write a note expressing your support for a Health Ministry decision to fund this drug for patients who need it to live. You can write to the Health Minister here:

Dawn Primarolo MP
PO Box 1002
Bristol
BS99 1WH

or

Dawn Primarolo MP
House of Commons
London
SW1A 0AA

(email) primarolod@parliament.uk

or phone her office here: (tel) 0117 909 0063; 0117 909 0064.

A friend of mine is a PNH patient. I would be very grateful to you if took a moment to act on this as soon as you can. If you aren't a UK citizen, but have some UK citizens on your friendslist, please make a post.