Emergency! Father Needs Expensive Drug To Save Sight

mathsForFun

My father is blind in one eye, has macular degeneration in the other, and has almost lost his sight. We are told that the only chance to save it is the drug Lucentis (http://en.wikipedia.org/wiki/Lucentis), which costs around £2000 per injection, to a total of around £50,000. A decision has been made that our health authority (W Mids) will not pay for the treatment. We can pay ourselves, and the consultant has asked for a quick decision about this - hence the urgency.

I do not expect anyone here to have a quick or easy solution - but any ideas, even if they turn out to be completely useless, would be extremely welcome.

Would there be any mileage in going to other health authorities - or is that just for operations, not drugs? Is there any chance that it would be done in Scotland, where provision is more generous?

Does anyone know of any clinics overseas (or where I can get phone numbers for clinics overseas) that might do this treatment for a lower cost?

Again - a heart-felt thanks for any thoughts that might help us here - no matter how "stupid".

margaretclare

Hello, and deep sympathy to you and your Dad.

This is one of the drugs that AFAIK is available in the devolved parts of the United Kingdom where they are able to make decisions about what drugs are allowed, but not in England where the National Institute for Clinical Excellence (NICE) makes these decisions.

By 'googling' you may find out a lot about this injustice, because it is affecting a lot of people. Also there are other drugs, for a variety of conditions, same applies.

missile

I have no idea whether this drug is available anywhere else in the UK, but I don't think you can simply move to access treatment in another region.

If you can afford to go private, you might want to check out the cost of this drug and treatment in a.n.other countries. I was amazed to find that some drugs are available over the counter in Spain at less than the cost of a prescription in rip off Britain.

I have heard people making appointments in a number of EU countries to beat the queues in UK. The phone number for San Jaime hospital is 0034 966921313 and Hospital Universario de san Juan de Alicante is 0034 965938700

brightonman123

get the Sun on the case- nothing like bad publicity! hope things work out.

Merrywidow

Hi missile - can I pick your brains. You were talking about prescriptions in Spain - am I correct in assuming that pensioners get free medicine in Spain?

missile

Merrywidow wrote: »

Hi missile - can I pick your brains. You were talking about prescriptions in Spain - am I correct in assuming that pensioners get free medicine in Spain?

You are correct. You will need to present evidence of entitlement, i.e. a passport to verify your age and an EIHC card. For most medication, if you take the old packet to a "farmacia" they will generally be able to give you a repeat prescription on the spot. For some restricted drugs you may need a doctors prescription.

It is not only the Scotts who look after their elderly :T

Merrywidow

Thanks missile - don't misunderstand my question - I get free prescriptions in England for my medication because I am over 60, got them before too because I am diabetic. Am considering moving to Spain and it would be a costly business if I had to pay for the amount of stuff I stick down my throat each day.

[Deleted User]

they just announced in that lucentis will be available on prescription in wales, very soon (as will single sex wards and real os ward sisters also in charge of cleanliness)

What the op`s father is going through is a national disgrace and I would second her going to the media about her father. Bombard every editor and every broadcasting company. The matter is very very urgent

ps: do a sit in somewhere relevant as that will attract publicity

margaretclare

This is discrimination against the English. This drug is just one of a whole series of drugs which are not prescribed in England but are available in the devolved parts of the UK. A recent scandal was about drugs for cancer sufferers, there are others that spring to mind - Alzheimer's sufferers, a whole lot of them.

Write to your MP. Address here: https://www.theyworkforyou.com

HTH

Mrs_pbradley936

I know about this because the women next door to my mother had the same thing and her son was paying £2000 a time for the injections. They had said she could not have it on the NHS until she went blind in one eye!

missile

Merrywidow wrote: »

Thanks missile - don't misunderstand my question - I get free prescriptions in England for my medication because I am over 60, got them before too because I am diabetic. Am considering moving to Spain and it would be a costly business if I had to pay for the amount of stuff I stick down my throat each day.

Sorry to hear you are diabetic, but be assured (IMHO) the health service in Spain is excellent. Pensioners are quite well cared for, as an EU pensioner:
If you do choose to visit, you get free medical treatment and prescriptions as noted in my post.
If you choose to become resident, you will also qualify for a free two week holiday. I believe this is available throughout spain, or at least those in Alicante region do. Apply at the local town hall.

and ofcourse sunshine works wonders for all our little aches and pains

Pleased to help, if you need any more info?