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

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

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!