not your typical annihilatrix (furiosity) wrote,
not your typical annihilatrix
furiosity

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one drink and the pain goes down

Happy birthday, Harry Potter. ♥

I saw this on bethbethbeth's journal. A friend of hers is living with a rare blood condition called Paroxysmal Nocturnal Haemoglobinuria (PNH) whose symptoms are debilitating; a person cannot lead a normal life like most of us understand it -- imagine being physically unable to carry home two bags of groceries, ever. Since 2004, Beth's friend has been receiving an experimental drug to control the symptoms; it had dramatically improved her quality of life. Now that the trial is over, the UK's National Health Service (NHS) doesn't want to continue funding the drug (it is very expensive).

I am not an expert on the whys and hows of publicly funded healthcare, but as I understand it, PNH is so rare a condition that the NHS cannot justify spending £250 000 per patient per year to help just a handful of people. Except, you know, I think public healthcare ought to extend to everyone, not just those with relatively wide-spread illnesses. I don't know what sort of world it is where it's cost effective and thus acceptable to turn your back on someone's suffering when you have the means to help them. I also don't know what sort of world it is where pharmacons are allowed to hold sick people hostage in this way, though that's probably my old grudge showing.

If you're a UK resident, please consider writing to the Health Minister (details in blog entry linked above) and asking for help on behalf of the patients with PNH. Alternatively, please sign this online petition -- and if you, like me, aren't a UK resident, please consider just spreading the word.
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