Monday 25 May 2009

Trying to find wet AMD treatments info

My grandmother called yesterday and was worried about her deteriorating eye sight. She thinks the issue this time, she has already been operated on both eyes, it might be the so called yellow spot - wet AMD. She now wanted to be a bit prepared before going to the eye clinic and wanted to check if it was correct that there was treatment but it had not been approved jet.

Well some checking showed that since a couple of years back there are a couple of treatments approved across the EU. But its not that strange she didn´t know this - the authorities have a tendency to not inform overly much about new expensive treatments and the industry is basically not allowed to to tell. Now there are of course allways ways to see what medicines are available, how they work and should be used, who produce them etc - in Sweden you find the information on I checked for approved treatments and Novartis Lucentis and Pfizers Macugen but only Lucentis is reimbursed in Sweden.

So having managed to find out that there is a treatment, and that its approved and also reimbursed could we feel safe that my grandmother gets the treatment? No - its a very expensive treatment so if the regional level have the drug on their lists of drugs allowed to be prescribed by the doctors is next question. Not all think the taxpayers should spend around 10000 Euros a year on medicines to a 93 year old woman... Even though keeping her sight might mean the different between going into a some kind of longterm care or her being able to continue to live on her own. Even if there is an approved treatment its not sure you can argue your case and get it due to for example silo budgeting where costs for longterm care is managed by one authority and costs for pharmaceuticals by another!

(If you live in the UK the RNIB, an patient association for blind and partially sighted people, have a support number if you have been refused treatment: 0845 766 9999.)

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