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	<title>Comments on: NICE decision on kidney cancer drugs &#8211; have your say</title>
	<atom:link href="http://scienceblog.cancerresearchuk.org/2008/08/06/nice-decision-on-kidney-cancer-drugs-have-your-say/feed/" rel="self" type="application/rss+xml" />
	<link>http://scienceblog.cancerresearchuk.org/2008/08/06/nice-decision-on-kidney-cancer-drugs-have-your-say/</link>
	<description>The latest news, views and opinions from Cancer Research UK</description>
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		<title>By: Jack Large</title>
		<link>http://scienceblog.cancerresearchuk.org/2008/08/06/nice-decision-on-kidney-cancer-drugs-have-your-say/#comment-996</link>
		<dc:creator>Jack Large</dc:creator>
		<pubDate>Mon, 22 Dec 2008 21:34:29 +0000</pubDate>
		<guid isPermaLink="false">http://cancerresearchuk.wordpress.com/?p=293#comment-996</guid>
		<description>ABANDONED BY THE NHS IN OUR HOUR OF NEED!
After removal of kidney in summer and scans showing spread- no treatment come back in 3 months for further scans and then NICE may have awoken from its slumber and provide treatment according to medical need not financial.
Will  they ever really understand what it is like to know that treatment is possible but not available I do.</description>
		<content:encoded><![CDATA[<p>ABANDONED BY THE NHS IN OUR HOUR OF NEED!<br />
After removal of kidney in summer and scans showing spread- no treatment come back in 3 months for further scans and then NICE may have awoken from its slumber and provide treatment according to medical need not financial.<br />
Will  they ever really understand what it is like to know that treatment is possible but not available I do.</p>
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		<title>By: Andrew</title>
		<link>http://scienceblog.cancerresearchuk.org/2008/08/06/nice-decision-on-kidney-cancer-drugs-have-your-say/#comment-965</link>
		<dc:creator>Andrew</dc:creator>
		<pubDate>Mon, 15 Dec 2008 05:16:43 +0000</pubDate>
		<guid isPermaLink="false">http://cancerresearchuk.wordpress.com/?p=293#comment-965</guid>
		<description>NICE...an ironic name really, they are far from it.  Still waiting to find out if my mother who is suffering from Kidney and Bone Cancer will receive treatment, because of the fact this isn&#039;t &quot;cost-effective&quot; for the NHS.  She has been a Nurse for 35 years, working for the NHS and is one of the most respected nurses in the area.  My Mum brought my sisters and I up single handedly, choosing not to rely on the state but to set a shining examply to us.  After paying NI contributions all of her working life, and working for the NHS, they are now failing her when she needs them most.  Such a traumatic time for my Mum, our family her friends and colleagues, and this is the thanks she gets from an organisation she has given her life to.  I&#039;m disgusted, angry, and totally shocked that a price is put on peoples lives in such a way.  Why exactly do we pay NI contributions all our lives if we can&#039;t use them??  You can bet your bottom dollar if we were a family of dole bates and living from benefits my Mother would have started treatment a long time ago!!!</description>
		<content:encoded><![CDATA[<p>NICE&#8230;an ironic name really, they are far from it.  Still waiting to find out if my mother who is suffering from Kidney and Bone Cancer will receive treatment, because of the fact this isn&#8217;t &#8220;cost-effective&#8221; for the NHS.  She has been a Nurse for 35 years, working for the NHS and is one of the most respected nurses in the area.  My Mum brought my sisters and I up single handedly, choosing not to rely on the state but to set a shining examply to us.  After paying NI contributions all of her working life, and working for the NHS, they are now failing her when she needs them most.  Such a traumatic time for my Mum, our family her friends and colleagues, and this is the thanks she gets from an organisation she has given her life to.  I&#8217;m disgusted, angry, and totally shocked that a price is put on peoples lives in such a way.  Why exactly do we pay NI contributions all our lives if we can&#8217;t use them??  You can bet your bottom dollar if we were a family of dole bates and living from benefits my Mother would have started treatment a long time ago!!!</p>
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		<title>By: Andrew</title>
		<link>http://scienceblog.cancerresearchuk.org/2008/08/06/nice-decision-on-kidney-cancer-drugs-have-your-say/#comment-801</link>
		<dc:creator>Andrew</dc:creator>
		<pubDate>Sun, 09 Nov 2008 17:37:17 +0000</pubDate>
		<guid isPermaLink="false">http://cancerresearchuk.wordpress.com/?p=293#comment-801</guid>
		<description>I think it is useful and important to have an organisation such as NICE to focus attention on the cost effectiveness of treatments and in theory it is a step forward in promoting a rational approach to the use of resources. However, the flaws of an organisation such NICE need to be acknowledged and their decisions should not go unchallenged where their approach to assigning a monetary value to a standardised estimate of quality of life (the &quot;QALY&quot;) results in an irrational or unethical conclusion.

In the case of Renal Cell cancers NICE have rejected not one but 4 different but clinically effective drugs. The basis on which they have made their decision is by an analysis of randomised controlled trials looking at the 4 drugs separately. Whilst this is the only way to obtain statistically useful information about the effectiveness of an individual drug, it does not reflect the way that onchologists use such drugs in practice - patients are tried on first one drug and if they are a non-responder, they are swapped to another until an effective drug is found. This &quot;suck it and see&quot; approach is pragmatic but extremely difficult to test in a trial without introducing bias - the problem is that this may be an extremely effective strategy in treating patients - it may even be cost effective - we just do not have the tools to demonstrate it and NICE are not able to consider it. By rejecting all 4 drugs, NICE has put a stop to all &quot;suck it and see&quot; strategies using these drugs which are known to be clinically effective in a proportion of patients. I would like to see a trial that tests this approach - shuttling though several alternative drugs until a response is seen as I suspect it may prove far more effective (AND cost-effective) than trials looking at the outcome using individual drugs against placebo or one standard control drug such as Interferon.

A second problem with the approach of NICE in patients who are at high risk of dying is that the more effective the drug the less cost-effective it becomes using NICE analysis techniques. This is partly because dead patients are very cheap to treat whereas the costs of success continue to escalate. NICE acknowledges this problem (quietly) in their appraisal. It is a fundamental paradox of any cost effectiveness analysis that looks at groups of patients with a high probablility of dying and means that NICE should use a different type of approach when analysing &quot;end of life&quot; data - this applies to most cancer trials. The simplest way to accomodate this paradox would be to put a higher value on a &quot;life&quot; in this particular category of trial - for example by accepting £60 or 80,000 per QALY, rather than the current £30,000 per QALY.

By the way - I am a doctor (a cardiologist) and have no interests relating to any Pharmaceutical company or NICE. None of my friends or relatives have suffered from a renal tumour - my main motivation is to try to find ways of improving NICE&#039;s decision making.</description>
		<content:encoded><![CDATA[<p>I think it is useful and important to have an organisation such as NICE to focus attention on the cost effectiveness of treatments and in theory it is a step forward in promoting a rational approach to the use of resources. However, the flaws of an organisation such NICE need to be acknowledged and their decisions should not go unchallenged where their approach to assigning a monetary value to a standardised estimate of quality of life (the &#8220;QALY&#8221;) results in an irrational or unethical conclusion.</p>
<p>In the case of Renal Cell cancers NICE have rejected not one but 4 different but clinically effective drugs. The basis on which they have made their decision is by an analysis of randomised controlled trials looking at the 4 drugs separately. Whilst this is the only way to obtain statistically useful information about the effectiveness of an individual drug, it does not reflect the way that onchologists use such drugs in practice &#8211; patients are tried on first one drug and if they are a non-responder, they are swapped to another until an effective drug is found. This &#8220;suck it and see&#8221; approach is pragmatic but extremely difficult to test in a trial without introducing bias &#8211; the problem is that this may be an extremely effective strategy in treating patients &#8211; it may even be cost effective &#8211; we just do not have the tools to demonstrate it and NICE are not able to consider it. By rejecting all 4 drugs, NICE has put a stop to all &#8220;suck it and see&#8221; strategies using these drugs which are known to be clinically effective in a proportion of patients. I would like to see a trial that tests this approach &#8211; shuttling though several alternative drugs until a response is seen as I suspect it may prove far more effective (AND cost-effective) than trials looking at the outcome using individual drugs against placebo or one standard control drug such as Interferon.</p>
<p>A second problem with the approach of NICE in patients who are at high risk of dying is that the more effective the drug the less cost-effective it becomes using NICE analysis techniques. This is partly because dead patients are very cheap to treat whereas the costs of success continue to escalate. NICE acknowledges this problem (quietly) in their appraisal. It is a fundamental paradox of any cost effectiveness analysis that looks at groups of patients with a high probablility of dying and means that NICE should use a different type of approach when analysing &#8220;end of life&#8221; data &#8211; this applies to most cancer trials. The simplest way to accomodate this paradox would be to put a higher value on a &#8220;life&#8221; in this particular category of trial &#8211; for example by accepting £60 or 80,000 per QALY, rather than the current £30,000 per QALY.</p>
<p>By the way &#8211; I am a doctor (a cardiologist) and have no interests relating to any Pharmaceutical company or NICE. None of my friends or relatives have suffered from a renal tumour &#8211; my main motivation is to try to find ways of improving NICE&#8217;s decision making.</p>
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		<title>By: tony 123</title>
		<link>http://scienceblog.cancerresearchuk.org/2008/08/06/nice-decision-on-kidney-cancer-drugs-have-your-say/#comment-800</link>
		<dc:creator>tony 123</dc:creator>
		<pubDate>Sat, 08 Nov 2008 14:06:24 +0000</pubDate>
		<guid isPermaLink="false">http://cancerresearchuk.wordpress.com/?p=293#comment-800</guid>
		<description>the cure for all cancers ,is the cancer it,s itself</description>
		<content:encoded><![CDATA[<p>the cure for all cancers ,is the cancer it,s itself</p>
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		<title>By: Kat Arney</title>
		<link>http://scienceblog.cancerresearchuk.org/2008/08/06/nice-decision-on-kidney-cancer-drugs-have-your-say/#comment-610</link>
		<dc:creator>Kat Arney</dc:creator>
		<pubDate>Tue, 16 Sep 2008 14:33:05 +0000</pubDate>
		<guid isPermaLink="false">http://cancerresearchuk.wordpress.com/?p=293#comment-610</guid>
		<description>Thanks for all your comments.  We have now made our response to NICE - you can read it in this post here:
http://scienceblog.cancerresearchuk.org/2008/09/16/nice-rejection-of-four-kidney-cancer-drugs-our-response/

Kat</description>
		<content:encoded><![CDATA[<p>Thanks for all your comments.  We have now made our response to NICE &#8211; you can read it in this post here:<br />
<a href="http://scienceblog.cancerresearchuk.org/2008/09/16/nice-rejection-of-four-kidney-cancer-drugs-our-response/" rel="nofollow">http://scienceblog.cancerresearchuk.org/2008/09/16/nice-rejection-of-four-kidney-cancer-drugs-our-response/</a></p>
<p>Kat</p>
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		<title>By: Jill Hobbs</title>
		<link>http://scienceblog.cancerresearchuk.org/2008/08/06/nice-decision-on-kidney-cancer-drugs-have-your-say/#comment-605</link>
		<dc:creator>Jill Hobbs</dc:creator>
		<pubDate>Fri, 12 Sep 2008 14:56:01 +0000</pubDate>
		<guid isPermaLink="false">http://cancerresearchuk.wordpress.com/?p=293#comment-605</guid>
		<description>My mother died of kidney cancer, and it would have been great if she could have had a few more months or years to see her  great-granddaughter growing up.

I took part in Race for Life to raise money and awareness of research, so that more people can be spared the suffering that my mother and husband went through.  It is disgusting that new drugs that have been developed are refused to patients.  I know that resources are limited, but it seems that funds are found for non- life-limiting conditions, while families continue to loose loved-ones who could have had a good-quality life extended.</description>
		<content:encoded><![CDATA[<p>My mother died of kidney cancer, and it would have been great if she could have had a few more months or years to see her  great-granddaughter growing up.</p>
<p>I took part in Race for Life to raise money and awareness of research, so that more people can be spared the suffering that my mother and husband went through.  It is disgusting that new drugs that have been developed are refused to patients.  I know that resources are limited, but it seems that funds are found for non- life-limiting conditions, while families continue to loose loved-ones who could have had a good-quality life extended.</p>
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		<title>By: Tony T</title>
		<link>http://scienceblog.cancerresearchuk.org/2008/08/06/nice-decision-on-kidney-cancer-drugs-have-your-say/#comment-603</link>
		<dc:creator>Tony T</dc:creator>
		<pubDate>Thu, 11 Sep 2008 21:16:54 +0000</pubDate>
		<guid isPermaLink="false">http://cancerresearchuk.wordpress.com/?p=293#comment-603</guid>
		<description>PS

I shall continue to support Cancer Research and the wonderful NHS staff who work so hard on the limited resources available.</description>
		<content:encoded><![CDATA[<p>PS</p>
<p>I shall continue to support Cancer Research and the wonderful NHS staff who work so hard on the limited resources available.</p>
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		<title>By: Tony T</title>
		<link>http://scienceblog.cancerresearchuk.org/2008/08/06/nice-decision-on-kidney-cancer-drugs-have-your-say/#comment-602</link>
		<dc:creator>Tony T</dc:creator>
		<pubDate>Thu, 11 Sep 2008 21:11:28 +0000</pubDate>
		<guid isPermaLink="false">http://cancerresearchuk.wordpress.com/?p=293#comment-602</guid>
		<description>The decision by NICE to openly limit approvals on the basis of cost is a groundbreaking move. What it is saying in effect is that the NHS is limited by money and future treatment given will therefore be limited. 

Over the years I cannot remember one politician single ever saying that when canvassing for my vote. Sadly, I do not believe this will change and the contributors who so bravely take the &#039;let them die because of cost view&#039; play into the hands of the tokenist politicians. 

The bitter truth is that the NHS, because of the lack of resource, does not work for many at the time that they need help.</description>
		<content:encoded><![CDATA[<p>The decision by NICE to openly limit approvals on the basis of cost is a groundbreaking move. What it is saying in effect is that the NHS is limited by money and future treatment given will therefore be limited. </p>
<p>Over the years I cannot remember one politician single ever saying that when canvassing for my vote. Sadly, I do not believe this will change and the contributors who so bravely take the &#8216;let them die because of cost view&#8217; play into the hands of the tokenist politicians. </p>
<p>The bitter truth is that the NHS, because of the lack of resource, does not work for many at the time that they need help.</p>
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		<title>By: Nicola Foster</title>
		<link>http://scienceblog.cancerresearchuk.org/2008/08/06/nice-decision-on-kidney-cancer-drugs-have-your-say/#comment-601</link>
		<dc:creator>Nicola Foster</dc:creator>
		<pubDate>Thu, 11 Sep 2008 17:03:47 +0000</pubDate>
		<guid isPermaLink="false">http://cancerresearchuk.wordpress.com/?p=293#comment-601</guid>
		<description>To me it is as simple as this- a spending limit cannot be applied to human life. I understand that every treatment has a monetary cost but the majority of the time the cost of producing a drug and the price tag applied by the drug company for the end product are two entirely different things. Absolutely every avenue should be explored and exhausted before a decision that nothing more can be done, is made.</description>
		<content:encoded><![CDATA[<p>To me it is as simple as this- a spending limit cannot be applied to human life. I understand that every treatment has a monetary cost but the majority of the time the cost of producing a drug and the price tag applied by the drug company for the end product are two entirely different things. Absolutely every avenue should be explored and exhausted before a decision that nothing more can be done, is made.</p>
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		<title>By: Kat</title>
		<link>http://scienceblog.cancerresearchuk.org/2008/08/06/nice-decision-on-kidney-cancer-drugs-have-your-say/#comment-600</link>
		<dc:creator>Kat</dc:creator>
		<pubDate>Thu, 11 Sep 2008 16:32:37 +0000</pubDate>
		<guid isPermaLink="false">http://cancerresearchuk.wordpress.com/?p=293#comment-600</guid>
		<description>Thanks for all your comments, we&#039;ll be using them when we make our representations to NICE

Again, a couple of the commenters above have been questioning the point of donating to cancer research when drugs are not made available to patients.

To answer this, we’ve explored some of the issues in this post here:

http://scienceblog.cancerresearchuk.org/2008/08/27/whats-the-point-of-funding-cancer-research/

Kat</description>
		<content:encoded><![CDATA[<p>Thanks for all your comments, we&#8217;ll be using them when we make our representations to NICE</p>
<p>Again, a couple of the commenters above have been questioning the point of donating to cancer research when drugs are not made available to patients.</p>
<p>To answer this, we’ve explored some of the issues in this post here:</p>
<p><a href="http://scienceblog.cancerresearchuk.org/2008/08/27/whats-the-point-of-funding-cancer-research/" rel="nofollow">http://scienceblog.cancerresearchuk.org/2008/08/27/whats-the-point-of-funding-cancer-research/</a></p>
<p>Kat</p>
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