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Author Topic: An online petition about a cancer drug refused by NICE  (Read 4600 times)

broadstairs

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An online petition about a cancer drug refused by NICE
« on: March 16, 2009, 11:21:58 PM »

Some 3 years ago my wife was diagnosed with the aggressive HER2 type breast cancer and was lucky enough to be treated with a newly available drug called Herceptin. She is currently free of cancer but we are both very annoyed at NICE in the UK for refusing another relatively new drug called Tyverb (or sometimes Tykerb, chemical name Lapatinib), this drug represents the best available treatment for the HER2 type of breast cancer which when it returns (and this type does return more often than not) and it usually returns in the brain,liver and bone as well as other places.

NICE has decided that this drug is not 'cost effective' and therefore will not be recommended for use in the UK, it is however widely used in other EU countries and in the USA. The drug has had a European License since December 2007 and NICE has taken just over 2 years to come to this decision despite support from Glaxo Smith Kline who make it being willing to part pay for its use as they are so confident in its effectiveness, and there is plenty of hard clinical trial evidence about its effectiveness.

An online petition has been started today at iPetitions. We would be greatfull if any of you feel you can support this petition by signing it electronically. It is hoped that there will be a big enough voice to help push through an appeal against this decision by the closing date for appeals of 27th March 2009.
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kitz

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Re: An online petition about a cancer drug refused by NICE
« Reply #1 on: March 17, 2009, 02:38:01 AM »

Signed

Just pointing out to anyone that signs it, you do Not have to make a donation to iPetitions... just skip the page.

IIRC the debate over Herceptin has been long running and was often luck of the draw on where you lived as to whether or not you got treatment with it whilst NICE made up their mind.  I wasnt aware that NICE is now refusing another new drug  :(

--------------------
Broadstairs

I dont know who is running the campaign, but if either you or your wife does..  then it may be worthwhile mentioning to them to start one on the official Prime Ministers site at http://petitions.number10.gov.uk/
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UncleUB

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Re: An online petition about a cancer drug refused by NICE
« Reply #2 on: March 17, 2009, 06:59:01 AM »

Signed.

Once again no money for people in this country but..................I'll say no more.
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roseway

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Re: An online petition about a cancer drug refused by NICE
« Reply #3 on: March 17, 2009, 07:10:06 AM »

Signed.
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  Eric

toulouse

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Re: An online petition about a cancer drug refused by NICE
« Reply #4 on: March 17, 2009, 07:16:06 AM »

Signed
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tuftedduck

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Re: An online petition about a cancer drug refused by NICE
« Reply #5 on: March 17, 2009, 07:24:20 AM »

Signed
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chrissie

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Re: An online petition about a cancer drug refused by NICE
« Reply #6 on: March 17, 2009, 07:53:10 AM »

I signed it to, hope it does some good.
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scottiesmum

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Re: An online petition about a cancer drug refused by NICE
« Reply #7 on: March 17, 2009, 08:13:34 AM »

Signed.
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broadstairs

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Re: An online petition about a cancer drug refused by NICE
« Reply #8 on: March 17, 2009, 08:48:49 AM »

Signed

Just pointing out to anyone that signs it, you do Not have to make a donation to iPetitions... just skip the page.

IIRC the debate over Herceptin has been long running and was often luck of the draw on where you lived as to whether or not you got treatment with it whilst NICE made up their mind.  I wasnt aware that NICE is now refusing another new drug  :(

--------------------
Broadstairs

I dont know who is running the campaign, but if either you or your wife does..  then it may be worthwhile mentioning to them to start one on the official Prime Ministers site at http://petitions.number10.gov.uk/

I must admit I had not seen the donation page on this site. Also this is not something we have instigated but are fully supporting it.

On the Herceptin side there is likely to be another campaign because NICE have new guidelines for Advanced Breast Cancer treatment which withdraws Herceptin once the cancer has spread beyond the central nervous system (defined as brain and spinal cord), advanced is defined as a return of cancer or where the initial diagnosis shows it has already spread.

The really big issue here is that Herceptin is next to useless for cancer which has spread to the brain because it does not cross the blood brain barrier and Tyverb is effective because it does cross this barrier. So basically NICE are allowing a treatment with an ineffective drug and refusing one which works!
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jeffbb

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Re: An online petition about a cancer drug refused by NICE
« Reply #9 on: March 17, 2009, 06:17:56 PM »

Signed
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kitz

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Re: An online petition about a cancer drug refused by NICE
« Reply #10 on: March 17, 2009, 09:20:16 PM »

>> I must admit I had not seen the donation page on this site.

I'm not sure if it was just me then..  as soon as I recorded my details it looked like it was asking for a donation before I could continue.
The donation wasnt to cancer charity, but to the actual site that runs the petition... which is why I mentioned it.
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broadstairs

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Re: An online petition about a cancer drug refused by NICE
« Reply #11 on: March 18, 2009, 08:01:21 AM »

>> I must admit I had not seen the donation page on this site.

I'm not sure if it was just me then..  as soon as I recorded my details it looked like it was asking for a donation before I could continue.
The donation wasnt to cancer charity, but to the actual site that runs the petition... which is why I mentioned it.


I now know others have seen this as well. As I said this is not something we started and to be honest I would have used the number10 site as well but I'm not sure starting another will not just split the vote so to speak.... also the person who started this wanted support from outside the UK as well which is not possible on the number10 site.
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roseway

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Re: An online petition about a cancer drug refused by NICE
« Reply #12 on: March 18, 2009, 10:36:05 AM »

The page which you go to after entering your details does say something to the effect that your sign-up has been accepted, but it just isn't very obvious. It certainly shouldn't discourage people from signing.
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  Eric

broadstairs

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Re: An online petition about a cancer drug refused by NICE
« Reply #13 on: October 22, 2009, 09:31:59 AM »

Just to let folks know that it would appear that NICE are still going to refuse Tykerb to the UK population according to The Times. See here.
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UncleUB

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Re: An online petition about a cancer drug refused by NICE
« Reply #14 on: October 22, 2009, 09:39:13 AM »

I still can't understand this country........ :no:

We refuse these drugs because of cost,yet we send millions of pounds all over the world in overseas aid........... :no: >:(
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