Thursday, 7 August 2008

Shocked and disgusted......

I heard the news this morning whilst I was still in Brighton.  I couldnt believe it at first.....

NICE (National Institute for Clinical Excellence) has turned down approval for all FOUR kidney cancer drugs.

ALL of them.  Sutent, Nexavar, Avastin and Torisel.

So thats that.  According to NICE we (advanced kidney cancer patients) should just give up and die - quickly and quietly.

The clinical effectiveness of these drugs is beyond dispute - NICE even admitted that.  But its the cost they wont approve.

And yet a mere few months ago Gordon Brown said 'No patient will be denied any drug on the NHS on cost alone'.

Im stunned and shocked and distressed by this news.  I have funding which will continue, but any patient applying now will be turned down.  No PCT will approve funding now - even if the final decision isnt applicable until Janurary.

When countries such as Mexico, Argentina and Korea fund these drugs rountinely is it any wonder we, here in the UK, are considered a 3rd world country as far as cancer treatment is concerned?

(Just wanted to add Ive been off Sutent for just 4 days now and I feel GREAT !  All side effects virtually gone.  I shall start taking it again next week.  And in future I shall listen to Dr P when he warns me a particular course may be 'challenging' !!)

 

 

 

9 comments:

larryzzzz said...

UTTERLY incredible. Seeing as I almost feel I  `know ` u ,  I too was sickened by the news today: I would have had a modicum of respect had NICE come out and said it was a purely financial decision,athewr than hide behind behind platitudes.

This shouldn`t be the end Sprite, merely a beginning of ANOTHER fight that u seem so well equipped to deal with, u being a tough nut n all...!


As for ur break in Brighton...I hope u enjoyed it to the full. xx

jeadie05 said...

Yes I heard that on the news  too ,and thought of you ,but yesterday I heard the government had given the Northern Rock three billion ,so what can you say ? well quite alot  actually but it would be unprintable !..love Jan xx

faircolleen said...

I thought of you today too. . .I think its an effing scandal that people will be denied this drug .So many wrong people cry human rights and compensation this and that and get huge amounts of money.Its all wrong,it really is.
Im glad that you are feeling great though.

shrbrisc said...

that furiates me if it was there lives it would be a different story wouldn't it .. I will keep you in my prayers

hugs
Sherry

tellsg said...

Shame and disgrace about this news, I am disgusted too and have always thought anyway that the postcode lottery of distribution is beyond the pale.  Everyone should be entitled to these drugs and this is taking away hope.  On another note, I am so pleased you are feeling ok and that the side effects have almost gone, good for you.  Hugs, Tells x  

mortonlake said...

i heard  the news  and  thought of you.   bloody  government  should  read  your journal  jane.   glad  you  feeling  ok      may  you continue  to do so  for  a  long,long  time  to come          take care   love  mort  xxxx

sybilsybil45 said...

Like you dear friend, I am completely disgusted at the outcome of the NICE deliberations...It is beyond me how they evaluate these and all the other drugs. I don't suppose there is anything now that we can do, other than keep campaigning and writing to Gordon Brown etc. I would think that the kidney patient ass and all the cancer charities will be keeping up the pressure.  When I think of tha costs of the Aids drugs etc which people may have to take for years and years...at what cost ?  I know that there has to be a point where there has to be a stop...but it seems so so cruel.  EVen if one could possibel find the money to fund the drugs yoursleves they cruelest thing I think and unbelieveabel to me is that you can no longer get any NHS treatment free ??  It is really beyond me.  But I am heart sorry for everyone in the same situation.   Keep smiling...come back soon and let us know how the break in Brighton has gone.  Much LOve  Sybil xxx

http://journals.aol.co.uk/sybilsybil45/villagelife/

helmswondermom said...

That is absolutely horrible and unconscionable that they won't approve the expense for cancer drugs that are proved to work.  I'm glad you are feeling so much better, and I hope your next round of Sutent doesn't kick your butt like that one.  I hope the tumors didn't start growing again, too.
Lori

marymcbth said...

I have written to my MP Jane and she is going to pass the letter to London. Pleased that you're feeling better. Eat well; sleep well; take care and I shall light another special candle for that God I don't believe in <g>Mary