Reaching Out To The ACOR Crew…….

Folks,

I know this is a bit of a cheek, however nothing ventured nothing gained as they say.

As you’re probably aware in the UK we are struggling to get the 4 main RCC drugs (SUTENT, AVASTIN, TORISEL and NEXAVAR) made available on our supposed free National Health Service (NHS). The Government committee N.I.C.E (National Institute for Clinical Excellence) who decide on what drugs get passed into general use have decided that Kidney Cancer patients will be denied the right to these drugs and effectively be left out in the cold.

This is a disgrace and urgently needs to be stopped and over turned. As part of this cruel ruling they have also only given us 20 days (now 11) to respond to this before the right to reply is closed. Demonstrations and events are being organised by a number of groups in the UK over the next few weeks to help get the message across.

Now, here’s the cheeky bit. I realise this is a big ask, but any international direct responses we can get to N.I.C.E would be greatly appreciated, especially from those who have direct experience of these drugs or from those who have expert knowledge in any capacity..

You can see some of the recent news articles on the subject on our front-page:

http://www.kidneycancerresource.com/

You’ll also see on the right hand side of the page (just below the Red banner) a link that says:

“Click here to get your personal response on their Web-site by 29th Aug 2008”

If you click though it will take you through to the N.I.C.E site where you can put your comments. As with most government things they’ve made it as complex as possible to put us off, however at least it’s open to international responses.

I realise that this is a big ask and I fully respect your wishes if you would rather not do it, however any suggestions on general campaigning you may have would also be gratefully received.

Sincerely

Andy

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3 Responses to “Reaching Out To The ACOR Crew…….”

Mike McCartney
August 18th, 2008 at 6:07 pm

Sutent has stopped my wife’s Renal Cell Carcinoma in it’s tracks after only three months. It had been growing rapidly now two of her lung nodules have shrunk 33 and 50% each. The other mets areas are stable. She has no new growths and I talked to a man today in Australia who has been on Sutent for five years and in free of Cancer. It may not cure the RCC but it definitely works and buys us enough time until a cure comes out. Everolimus will be avail in about five months. Without Sutent I don’t believe my wife would be alive today. It is vital to her treatment and is a viable option for any RCC victim.
Win Gregory
August 18th, 2008 at 8:14 pm

please do not ‘tar’ us with the same brush as other people…we have as much right *if not more* than the people who you have decided that:
A tablet is available to create a life
A tablet is available to terminate a life
Druggies
Alcoholics
Smokers
These people are more important to you than ME !!!!
That is what you are saying….well if that is the case - I wish on you what you have given me……SLEEPLESS NIGHTS…..
Peggy Zuckerman
August 19th, 2008 at 2:40 am

I know a number of people in my kidney cancer support group who have taken Sutent for over 24 months, having participated in clinical trials early on. Each of them owes their lives-lived well and productively–due to the efficacy of sutent. The NICE should understand better than the average citizen that the statistics are not exactly reflective of the response that the more typical patient receives. Don’t let the UK become the pariah of the medical world due to this willful refusal to see the reality of the cures. Peggy Zuckerman

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Reaching Out To The ACOR Crew…….

3 Responses to “Reaching Out To The ACOR Crew…….”

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