http://news.bbc.co.uk/1/hi/health/7513484.stm

discuss

On Jul 22, 6:14 am, Andy wrote:
> http://news.bbc.co.uk/1/hi/health/7513484.stm
>
> discuss

It is utter nonesense - for all the reasons cited in the article.
There is no way to tell in advance how someone will respond to a drug
and all of these drugs lose effectiveness over time. It is another
example of short-term thinking that will result in long-term pain and
added costs.  I certainly hope that you folks in Great Britain can
kill this "guidance" before it kills you.

Walt Hanks

In article <444a6ef8-92d7-4d7b-8db7-ffe31c759e85@c58g2000hsc.googlegroup
s.com>, Walt  scribeth thus
>On Jul 22, 6:14 am, Andy wrote:
>> http://news.bbc.co.uk/1/hi/health/7513484.stm
>>
>> discuss
>
>It is utter nonesense - for all the reasons cited in the article.
>There is no way to tell in advance how someone will respond to a drug
>and all of these drugs lose effectiveness over time. It is another
>example of short-term thinking that will result in long-term pain and
>added costs.  I certainly hope that you folks in Great Britain can
>kill this "guidance" before it kills you.
>
>Walt Hanks

Course if the NICE people who made those decisions were afflicted with
Arthur they'd soon change their minds, but I suppose their Six figure
salaries enable them to pay for that privately:(............
-- 
Tony Sayer

On Jul 22, 5:42 am, Walt  wrote:
> On Jul 22, 6:14 am, Andy wrote:
>
> >http://news.bbc.co.uk/1/hi/health/7513484.stm
>
> > discuss
>
> It is utter nonesense - for all the reasons cited in the article.
> There is no way to tell in advance how someone will respond to a drug
> and all of these drugs lose effectiveness over time. It is another
> example of short-term thinking that will result in long-term pain and
> added costs.  I certainly hope that you folks in Great Britain can
> kill this "guidance" before it kills you.
>
> Walt Hanks

and then what happens when someone (like me) is allergic to
Rituximab?  I got weeping hives, it was awful, because they all got
infected.  Granted, I've already tried all the biologics, but what
happens to someone in my position?  Are they SOL?

>
> It is utter nonesense - for all the reasons cited in the article.
> There is no way to tell in advance how someone will respond to a drug
> and all of these drugs lose effectiveness over time. It is another
> example of short-term thinking that will result in long-term pain and
> added costs. I certainly hope that you folks in Great Britain can
> kill this "guidance" before it kills you.
>
> Walt Hanks

and then what happens when someone (like me) is allergic to
Rituximab?  I got weeping hives, it was awful, because they all got
infected.  Granted, I've already tried all the biologics, but what
happens to someone in my position?  Are they SOL?

   I had a hive reaction to Remicae but nooo weeeeping,,, thank goodness.

Harv

I can't remember Annie - have you tried orencia?

Kelly

"Smokie Darling (Annie)"  wrote in message 
news:485198aa-8859-4966-8764-af7320027fa5@26g2000hsk.googlegroups.com...
On Jul 22, 5:42 am, Walt  wrote:
> On Jul 22, 6:14 am, Andy wrote:
>
> >http://news.bbc.co.uk/1/hi/health/7513484.stm
>
> > discuss
>
> It is utter nonesense - for all the reasons cited in the article.
> There is no way to tell in advance how someone will respond to a drug
> and all of these drugs lose effectiveness over time. It is another
> example of short-term thinking that will result in long-term pain and
> added costs. I certainly hope that you folks in Great Britain can
> kill this "guidance" before it kills you.
>
> Walt Hanks

and then what happens when someone (like me) is allergic to
Rituximab?  I got weeping hives, it was awful, because they all got
infected.  Granted, I've already tried all the biologics, but what
happens to someone in my position?  Are they SOL?

On Tue, 22 Jul 2008 11:14:37 +0100, Andy
wrote:

>
>http://news.bbc.co.uk/1/hi/health/7513484.stm
>
>discuss

Ping Ruth Arnold....come back 
19 December 2001
"I've also sent a Press Release about the site to ARC,
Rheumatologyweb,
about.com, rheumatology.org.uk, arhtritiscare.org.uk and the BBC.

I've reproduced it below. Can any of you give me some ideas about who
else I
could send it to?

Some press, radio or TV coverage would be good wouldn't it.

Thanks!

ruth arnold
spacehoppa.com
www.nicecampaign.co.uk

FOR IMMEDIATE RELEASE
-----------------------------------------------------------------
New website launched to campaign for new anti-TNF drugs to be made
available
to arthritis sufferers in the UK, http://www.nicecampaign.org.uk
-----------------------------------------------------------------

A new website has been launched this week to collect positive personal
stories of arthritis sufferers who are using new anti-TNF drugs.

The web site's purpose is to provide compelling reasons why NICE
should
approve the drugs Enbrel* and Remicade* (also known as Etanercept and
Infliximab) for general use on the NHS in the United Kingdom.

The organisers of www.nicecampaign.org.uk want to achieve this by
creating a
sort of online, electronically-stored petition. Most of the people who
currently have access to these drugs are in America so, via the
internet
support groups: alt.support.arthritis and uk.people.support.arthritis
on
Usenet, those people already taking the drugs have been asked for
their
opinions on whether or not these new drugs are worthwhile.

The final results will be sent to NICE in time for their final
committee
meeting on 15th January 2002. This will be their final meeting before
announcing their decision whether to allow the new anti-TNF drugs to
be made
available via the NHS.

For more information or to add your comments visit the site at:
http://www.nicecampaign.org.uk

##

(*Footnote: If you want more information about the new anti-TNF drugs
go to
the excellent web pages of drdoc (Dr David Gotlieb) at
http://www.arthritis.co.za to find out more.)

Contact:

Ruth Arnold - the website organiser - can be contacted at:
r...@spacehoppa.com or by telephoning: 01270 766001.

-----------------------------------------------------------------
More information:
-----------------------------------------------------------------

About the site organiser...

Ruth Arnold, the organiser of www.nicecampaign.org.uk has had
rheumatoid
arthritis since the age of 15. Now 28 years old, she has steadily been
working her way through all the conventional treatments - diclofenac,
sulphasalazine, methotrexate and chloroquine, but nothing has ever
brought
the disease fully under control.

Like millions of arthritis sufferers around the world, she has a
fairly
aggressive form of the disease. She has joint contractures, joint
erosion
and restricted range of movement in many of her joints. Enbrel,
Remicade and
other drugs like it are looking increasingly necessary for Ruth and
other
sufferers who, like her, are running out of other options.

In Ruth's opinion, if NICE chooses to make these drugs available, they
should be offered not just to people who have already failed several
drugs
but should also be available to those people for whom the joint
destruction
is only just beginning. She says "If NICE make the right decision now,
we
could save generations to come a lifetime of difficulty and pain.".

About NICE.

NICE is an organisation in the UK whose responsibility it is to advise
both
the government and Local Health Authorities on which drugs and medical
equipment should be provided free at the point of delivery on the
National
Health Service.

It's remit states that: "It is part of the National Health Service
(NHS),
and its role is to provide patients, health professionals and the
public
with authoritative, robust and reliable guidance on current "best
practice"."

The upshot is, if NICE approve these drugs, they should become
available
nationwide to those patients that qualify as suitable candidates. At
the
moment hardly anyone in the UK has access to these drugs.

When will NICE's decision be made?

NICE have agreed to come to their final decision by March 2002. They
have a
final committee meeting on this matter scheduled for the 15th January
2002.
Go to http://www.nice.org.uk/cat.asp?c=20323 on the web to read more
about
it on the NICE web site."

UPSA posting stats from Google groups   	 
	
	Jan	Feb	Mar	Apr	May	Jun	Jul	Aug
Sep	Oct	Nov	Dec


2000
21 	75 	457 	433 	 
2001 	577 	498 	481 	242 	467 	521 	686 	533
720 	703 	597 	601 	 
2002 	551 	834 	1223 	770 	692 	544 	559 	586
576 	339 	319 	239 	 
2003 	358 	192 	526 	319 	279 	330 	150 	307
386 	325 	270 	261 	 
2004 	254 	345 	226 	209 	131 	188 	73 	111
281 	220 	217 	170 	 
2005 	89 	134 	127 	105 	70 	87 	95 	74
16 	64 	39 	39 	 
2006 	125 	93 	50 	31 	39 	27 	21 	13
42 	41 	71 	33 	 
2007 	29 	 6  	51 	47 	52 	57 	86 	69
71 	72 	126 	66 	 
2008 	32 	 8  	115 	73 	40 	26 	20

On 22 Jul, 12:42, Walt  wrote:
> On Jul 22, 6:14 am, Andy wrote:
>
> >http://news.bbc.co.uk/1/hi/health/7513484.stm
>
> > discuss
>
> It is utter nonesense - for all the reasons cited in the article.
> There is no way to tell in advance how someone will respond to a drug
> and all of these drugs lose effectiveness over time. It is another
> example of short-term thinking that will result in long-term pain and
> added costs.  I certainly hope that you folks in Great Britain can
> kill this "guidance" before it kills you.
>
> Walt Hanks

No doubt about it, many of the Decisions made by NICE are
controversial to say the least. The title is National Institute for
Clinical Excellence, but as far as I can see one its main functions is
to limit government expenditure on expensive drugs. This is done on
the grounds that they are considered to be ineffective in some way, or
not effective enough. Couple this to the fact that there is a post
code lottery for drugs like anti tnf inhibitors, even when NICE has
approved them and you get a picture of inconsistency in the supply and
allocation of these drugs in the UK.

Socialised medicine (the NHS) does not mean universally excellent free
medicine, although many Brits don't suffer the sort of expense you
people have in the U.S. Part of the trouble is the socialist doctrine
upon which the NHS was founded. For instance, if you are prepared to
pay for a drug which the NHS won't supply, they are likely to turn
round and say that they will not treat you for the disease at all and
you will have to pay for everything. (because of an outcry and the
total injustice of preventing people from saving their own lives, I
think that this has now been rescinded.

Anyway, NICE is wrong and inhuman to prevent those with severe RA from
having a try at a second anti tnf inhibitor, just because they failed
the first. If these people qualified for the drug in the first place
(after trying all the other dmards) the expense has already been
approved, so it costs no more if they are put on another anti tnf.
Hence penny pinching.

Sorry about the winge, but I fired up whe I think there is an
injustice.

Best wishes to all

Peter

On Tue, 22 Jul 2008 6:14:37 -0400, Andy wrote
(in message ):

> 
> http://news.bbc.co.uk/1/hi/health/7513484.stm
> 
> discuss

My first impression is that NICE needs at least one, preferably several 
people on the board with stubborn inflammatory arthritis!

And I agree whole-heartedly with Abagail Page's quote "It is short-sighted 
and pernicious that NICE can look only at cost to the NHS, not at total cost 
to the taxpayer in terms of benefits and social care. It is rationing without 
rationality. 

"When will the government do the maths and see that treating someone is often 
far cheaper than not treating them?"

I hope you all are effective in preventing the implementation of this 
exceedingly foolish recommendation!

(oh and why is the National Institute for Health and Clinical Excellence 
abbreviated NICE rather than NIHCE?  It certainly isn't *nice* in this 
instance!

-- 
Nann
remove the Gator cheer to email me
        Change everything. Love & forgive.