You are here

letters and emails sent re NICE

I am just sending off emails and letters to Minister of health, Shadow ditto/ also Lib dems.
local MP, Leader of opposition and Prime minister. Anyone else we should bombard?

Pennie.

Gordon Brown, David Cameron, Nick Clegg? I contacted Tony Blair when we campaigned for NICE to rethink their Glivec stance. I think this is going to be harder though.

Actually, if we are to make a noise about this and without doubt we should, the run up to a general election is as good a time to be going public as any. Newspapers are the best way to go.

Dear Pennie

I have just e-mailed the daily telegraph and Meridian Tonight News Desks. Don't know if anything will come of it but here's hoping.

I feel better doing something as I feel winded about the whole thing. Helps me channel my anger against Bill's diagnosis.

Keep fighting

Sarah

I am 31 and was diagnosed in May of this year and are on Dasatanib trial.

I was very happy to take this drug knowing fully well that there were other drugs available to me. Knowing that this may not happen is very scary.

Both my parents, sister and partner have not called upon the NHS but have paid into it.

Cml does affect all ages.

Could someone please put a template of a letter so we can send this out.

Carlos

Carlos
I wrote an intro asking for help to overturn the decision - use full name of the document. I quoted para 1.1.1 in full to make clear what I was objecting to.

Bit about myself, suggest what you have put in your posting would be excellent.

Then stressed that CML is rare cancer - so needs expensive research and drugs.

Hope this helps.

(there are very few of us so we need to shout very very LOUD)
ATB
Pennie

Great Sarah, I hope they pick up the story. Good luck.

know what you feel about being winded - Ifeel as if panic has taken over my brain and pure anger is whats keeping me functioning.

We all have to bang on doors write letters and make a really big fuss loudly.

ATB
Pennie.

Did anyone see the story on GMTV and ITV news today, about the Liver Cancer drug, which extends life for just a few months, being refused by NICE and the relaxed criteria for drugs which extend the life of rare cancer patients?

Sounds like this could be a hot story and good timing for CMLers to make the public aware of another poor decision by NICE. Does anyone have any knowledge or thoughts on how we might contact ITV and the BBC?

Let's tell everyone how wrong and worring this decision is!

Chris

Here is a link to why these drugs must be allowed they can and do help other people.

www.metro.co.uk

Carlos