There is a long period of misdiagnosis associated with ankylosing spondylitis (AS), an exceedingly painful spinal rheumatic disease. Sufferers, mostly people in their early 20s at this point, find this a humiliating and frustrating period, where considerable loss of posture and mobility of the spine and other joints can, in some cases, already become apparent.
The patients and rheumatologists who founded the National Ankylosing Spondylitis Society (NASS) in 1976 realised that many family doctors had insufficient knowledge to be in a position to give good advice on the disease and its associated conditions, such as psoriasis, uveitis and ulcerative colitis. They realised that patient education is an important aspect in the self-management of the disease, through a regular, vigorous, specific exercise programme.
NASS has donated over 100,000 copies of our guidebook for patients, mainly to hospital rheumatologists and physiotherapists. Over the years our membership has collaborated in several research studies, the biggest being a 10-year epidemiology study. As there is a genetic component to the condition, we are now associated with genetic research taking place in Oxford. The scientists are looking for genes that might explain the broad diversity of disease outcome. If these outcomes could be genetically predicted at diagnosis, decisions could be made as to which patients would experience rapid deterioration due to the aggressive form of the disease. These people could then be selected for treatment with one of the recently licensed anti-tumour necrosis factor-alpha agents (anti-TNF).
At the moment, the condition is treated by non-steroidal anti-inflammatory (NSAIDs) or disease modifying drugs, in combination with regular physiotherapy. Unfortunately, this physiotherapy is not available to all patients during hospital hours. Therefore, NASS has formed over 100 branches throughout the UK over the years, providing supervised physiotherapy for 2,000 patients one evening a week.
Unfortunately, NSAIDs have a very limited role to play in disease control, and the best one can hope for is a reduction in pain. The recent introduction of the anti-TNF alpha is the greatest advance since the first anti-inflammatory agent, phenylbutozone, in the 1950s.
TNF plays an important role in the inflammatory cascade in arthritis. Trials over the last few years in the US and Europe, have demonstrated efficacy in the treatment of the condition with these biological blocking agents. This is illustrated by a significant percentage reduction in scores of disease-outcome measurements in two-thirds of patients very soon after the patient has started taking anti-TNF. Some studies have been confirmed by x-ray and MRI images. There is also evidence of an improvement in bone mineral density, the loss of which is significant even at an early age, in AS.
Recent research has revealed that with a disease duration of 28 years, 30 per cent of AS sufferers are financially dependent on disability payments, with a further 15 per cent reporting changes to their working lives attributable to the disease, i.e. a reduction of hours worked and changes of occupation. These figures include a high proportion of people who are below the study’s mean age of 49 years.
Earlier in 2004, a working party from the British Society of Rheumatology (BSR), , presented guideline criteria as to whom should be put forward for anti-TNF treatment. As well as their own clinical experiences, they examined all the published clinical trials on the two agents concerned. A licence will soon be granted to a third manufacturer. The self-limiting aspect of these guidelines recognises the high cost of this treatment. However, this should be balanced against the expenses incurred by the state in supporting a person and their family on benefits. Some of our members describe work disability as producing depression, frustration, with bitter mood-swings, a feeling of inadequacy, a loss of self-confidence and self-esteem. By not treating these patients, we are incurring other costs to the health service, such as the treatment of the gastrointestinal problems produced by NSAIDs, as well as surgery, such as hip replacement (six per cent). Most of these people could return to work and would welcome the opportunity to do so.
Unfortunately, a growing number of our members are in a situation where the rheumatologist has advocated the use of anti-TNF, guided by the BSR criteria, but many PCTs are refusing treatment on the grounds of cost. This includes a bright schoolboy, who is having difficulty attending school due to stiffness and pain. In some areas, AS patients are receiving this treatment, yet a few miles away it is unobtainable.
It seems inconceivable that the most severe cases of this condition are being denied evidence-based life-changing treatment. It seems that we are, perhaps, the only country in Europe experiencing these problems. This is especially strange when you take into account the significance of TNF in the inflammatory process was recognised, and anti-TNF developed, by British scientists, with British research money, most of it raised by patients with rheumatic diseases.
This society is approaching its 30th anniversary. I cannot imagine a better way to celebrate this occasion, than to know that all AS patients who have met the disease criteria, will be the people choose whether they will receive this treatment or not.
