Jul. 31st, 2008

bossymarmalade: blue eye with lashes of red flower petals (Default)
Please consider adding your name to this petition if you are a resident of the UK; I seriously thought about going through the family address book and co-opting all of my English relatives' particulars, that's how important a cause this is.


That blog belongs to a UK citizen who has a rare, chronic and severely debilitating illness, Paroxysmal Nocturnal Haemoglobinuria (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:


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
BS99 1WH


Dawn Primarolo MP
House of Commons

(email) primarolod@parliament.uk

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

This is important for so many reasons, but battling the markups by pharmaceutical companies and the uneven allocation of resources are only a couple of them, and not even the topmost. That would be reserved for the fact that the person I know and love who has PNH is one of the dearest, bravest girls in the world, and if I had half her sunny and smart disposition I'd count myself lucky indeed.


bossymarmalade: blue eye with lashes of red flower petals (Default)
miss maggie

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