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Website launch - Campaign for anti-TNF drugs to be made available on NHS
Added: (Mon Jan 07 2002)
A new website has just been launched 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
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(*Footnote: For more information about the new anti-TNF drugs go to the web pages of drdoc (Dr David Gotlieb) at http://www.arthritis.co.za.)
Contact:
Ruth Arnold, the website organiser, can be contacted at: ruth@spacehoppa.com or by telephoning: 01270 766001.
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More information:
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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 most 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.
About arthritis:
Arthritis is the single biggest cause of disability in the UK and accounts for one-fifth of all visits to the doctor. Around 8 million people are
affected, including one child in every thousand belying the perception that arthritis only affects the elderly (source: Arthritis Research Council).