Latest News as @ 2oth October 2005

People who have signed the petition via the internet: 331
People who have signed the paper petition: 150

Target Number of petitioners required: 1000

20th October 2005

It is with great sadness that I announce that my mother (whose concept this site was and whose words form the pages) passed away in hospital on 1st September 2005 after a short illness, although her health had been in decline for the previous eighteen months. At this time I plan to continue what she started in the hope that not only do we have a safe treatment for RA sufferers which make a significant contribution to improving a patients quality of life, but also find a test to determine if other family members have a propensity towards the condition.

6th June 2005: Anti – TNF treatment works!

A very bold statement, but true! But, first of all – let me congratulate you all. By today's count we have nearly reached the half way mark with 481 signatures, which is a very respectable petition response. All participants can give themselves a pat at the back; my thanks to everyone.

The majority of the population does not know about this treatment, even if they have knowledge of rheumatoid arthritis either through family members or friends. And on the whole, people have no knowledge of the pain endured of this debilitating auto immune disease. Regrettably, there is still a postcode system operative in this country, but where Primary Care Trust are enlightened, patients have benefited.

However, the medical profession is very concerned about the post coding of anti-TNF treatment, including NICE, despite this NHS institution licensing ENBREL in the year 2000 and recommending its use for RA treatment in 2002.

In an article from the BBC, "Arthritis Patients Denied Drugs' various case studies are cited, all of which emphasised the need for more funding. Lack of money has led to long waiting lists for this treatment, while other patients with severe, aggressive RA are continued to be treated with conventional disease modifying drugs.

It is deplorable that this situation still prevails; a similar study carried
out in 2003 shows that in two years, no change has taken place.
"Health minister Jane Kennedy said that she believed NHS trusts had a
statutory duty to provide, 'cost effective treatment to people', who would
benefit and lack of funding was not an acceptable excuse".

The Government response has been to place specialist teams in strategic health authorities.Thus providing anti-TNF treatment drugs has led to more bureaucracy with less commitment to providing the treatment!. Money being wasted??

http://news.bbc.co.uk/1/hi/health/4612739.stm
BBC News/Health: June 6th, 2005

8th February 2005

The numbers signing the petition continues to grow. Thank you to everyone. I apologise for the time between updates but 2004 was a bad year health wise. I am slowly beginning to pull together information for a big update in the not so distance future so please bookmark this site and visit us again in a few months time. Thanks for your continued support.

18th August 2003

Thank you everyone who has signed the Petition so far. We have 145 signatures from Internet Referrals. My local hospital allowed me to exhibit a portfolio in its Arthritis Clinic, containing all the web site information. To date 103 patients have signed the Petition there. Thank you for your continuing support. Lets hope, by the time we have reached our target of 1000 signatures, and the Petition has been handed in to No.10 Downing Street, those of us suffering badly from RA will be able to get the funding we deserve to have the new anti-TNF treatment.

This Petition was started in April 2001, when the new anti-TNF drug was first mentioned: at that time the drug was called ENBREL. Then in March 2002 NICE (National Institute for Clinical Excellence) gave its approval for the use of this drug in the treatment of RA - but no funding has been made available generally for the NHS. My Local Health Authority made limited funds available and gradually more and more patients in my local Arthritis Clinic have benefited from what the doctors and nurses call here Biological Agents.

In the latest Arthritis Today issue of July 2003, you may have read the article entitled 'A Good Drug', in which the editor Jane Tadman reports within the four opening paragraphs that "the majority of patients with moderate RA will never get near anti-TNF therapy" because of the costs involved. She also mentions beside ENBREL - whose active ingredient is ETANERCEPT, - two other anti-TNF drugs used INFLIXIMAB and soon ADALIMUMAB.

Adalimumab is an anti-TNF treatment given by injection under the skin. But as yet it is not mentioned on the NICE web site. Adalimubis is a synthetic (man-made) protein which was approved in America in December 2002. Like the two other American drugs INFLIXIMAB and ENBREL, Adalimumab can be used alone or with other DMARDs, although methotrexate can reduce the absorption of this protein drug by 29% to 49%. The injections are recommended at 40 mg every other week. But as always the doctor's discretion will prevail

18th July 2002

The BBC carried a report on its Health Web site that a team of scientists at University College London (UCL) have discovered a molecule (chemically a combination of single atoms into a chain) which appears to trigger the immune system's response to attack the joints. Within the biochemistry of the cells are a number of active enzymes (proteins which act as chemical catalysts in the reaction process). The relevant group of enzymes (referred to as the P13-kinase) under healthy conditions affects the the growth, movement and survival of cells. But, if this group of enzymes runs out of control it will cause substantial defects in two specific white blood cells (lymphocytes) called B and T lymphocytes.

The UCL researchers worked with mice which had been genetically modified to switch the P-13 kinase enzyme off. These mice were apparently healthy with no ill effects on their heart and kidneys but were unable to produce a full immune response.By deactivating the P-13 enzymic activity the B and T lymphocytes were also deactivated. The researchers hope that this discovery will prove beneficial to a number of conditions, notably rheumatoid arthritis. In RA, the auto-immune systems' active B and T lymphocytes are actually attacking healthy cells.

It is possible that future medicines may be produced that will have fewer side effects than the current drugs used, like steroids. Moreover, other conditions, such as multiple sclerosis, leukemia and transplant rejections could also be treated.

22nd March 2002

NICE (National Institute fro Clinical Excellence) has given a qualified approval for the use of ENBREL in Rheumatoid Arthritis. Qualified in that patients who have so far not responded to more conventional treatments with steroids, methotrexate or any disease modifying drugs can try ENBREL. Given the high cost of the biological anti-TNF injections at £162.50 per patient per week, extra funding is needed. No extra funds have been made available to the NHS following the March announcement. Some Health Authorities have provided limited funding for patients in certain areas, who when joining the ENBREL programme, will be constantly monitored to measure the cost effectiveness of the treatment. If no overall improvement in the condition, then the patient has to come off the treatment after a few months.

8th December 2001

In December 2001 the BBC in one of its Breakfast programmes reported on a government initiative to curb post code prescriptions.

Where NICE (National Institute for Clinical Excellence) has approved modern drug treatment, the patient has the right to insist on getting that treatment, regardless of costs. However, no extra funding for that specific drug will be made available.

As far as ENBREL is concerned, NICE has delayed its decision on the new drug treatment for rheumatoid arthritis until the Spring of 2002.

With no extra funding for the NHS, according to the Government Guidelines, it will be difficult for any patient to insist on receiving the benefits of any given drug since the budget of consultants, physicians and GP's will be stretched to its limit. It simply means that patients demanding the more modern drugs will alienate the goodwill of those who care for them. It could possibly lead to favouritism replacing the post code prescriptions.

It is therefore more than important to get the ra-petition signed so we sufferers of this debilitating and often very painful disease can lobby Downing Street for the extra funding which will enable us to benefit from ENBREL when NICE has made a decision on this drug treatment.