'Even sneezing was a real pain'

By Jane Elliott
BBC News health reporter

Daniel had to give up his much-loved job as a bookseller

Daniel Knibb is only 41, yet he has already had to have a hip and both jaws replaced because of arthritis.

So many of his joints were badly affected by ankylosing spondylitis (AS) that he was in daily agony.

The condition started in his late teens, but gradually worsened until he had to give up the job he loved, as an academic bookseller.

Each morning it took Daniel, from Worthing, three or four hours for the stiffness in his joints to ease enough to move.

Pain

"The pain was so bad that I couldn't bear to sneeze because it hurt so much. If I were sitting in a car which went over a bump in the road I'd want to scream.

"I was very stiff, my hands and fingers were so swollen it was difficult to do things, even picking up a cup of coffee was difficult."

I wish this drug had been around 20 years ago, but I'm just glad it happened in my lifetime Daniel Knibb

Because he was in such pain his rheumatologist managed to get him onto anti-TNF therapy, drugs used to treat severe forms of inflammatory arthritis.

But others have not been so lucky. Although two of the drugs were licensed for use for the condition in 2003 the therapy has still not been approved by NICE (National Institute for Clinical Excellence) for use with AS patients. A decision is expected in February 2007.

So hospitals and primary care trusts do not have to fund the drug, although some do.

Benefits

Expert opinion is divided as to how many patients would benefit from the drugs - some estimate about 10% of the 60,000 patients - but a recent report in the journal Rheumatology say it could be as high as two-thirds.

Daniel is in no doubts about the benefits the drug has brought him and is even thinking about returning to work if they continue.

"I can do things now without worrying about the effects it would have on me. I like to go and watch football in Brighton. But it would physically kill me to sit on a seat for 90 minutes and then walk back to the station - it would totally wipe me out. Now I can do it without thinking, and enjoy it.

"It's been life-transforming.

"It is not a complete cure, but it is close to it. I can use my hands again and my pain is almost zero. It is better than I ever thought it would be.

"I wish this drug had been around 20 years ago, but I'm just glad it happened in my lifetime."

Ankylosing spondylitis The condition affects more than 60,000 people in the UK, mainly young men It causes severe pain in the lower back as the spine fuses, leading to progressive stiffness, restricting movement and increased immobility Because in the early stages it is similar to low back pain it is often not diagnosed for years

"I do know several people who I think should be on it, but they have not got the funding. I feel it should be licensed and everybody who needs it should have it because it is so life-changing."

Availability

Professor Paul Wordsworth of the Arthritis Research Campaign said the drug should be available to all.

"There are a few lucky patients who get the drug funded but many other AS sufferers are not so fortunate.

Help Exercise has been found to help people with AS, particularly stretches for the muscles and exercises for spinal joint movements. Hydrotherapy, yoga and gym work have shown benefits

"We would urge NICE to speed up its approval process so that other people can benefit from the extraordinary transformation that these drugs can bring to AS patients.

"We are having to battle for every patient and it's completely inappropriate to apply the NICE guidelines in this way; to exclude clinicians from using proven and licensed agents which have very good trial data.

"Most people with AS are of working age who have to give up work and go onto state benefits.

"If they got the treatment they needed and which is available, many would be able to go back to work."

A spokeswoman for NICE said they were unable to comment until a decision has been made.