A MOTHER-OF-TWO whose spinal arthritis left her in such pain it made her suicidal has been denied the "wonder" drug she says changed her life.

Gillian Eames, of Hillside Road, Shortlands, has suffered from ankylosing spondylitis for more than 20 years.

The condition is a chronic, painful and degenerative inflammatory arthritis which affects the spine, causing eventual fusion of the joints.

In 2002 Mrs Eames took part in a commercial clinical drug trial and was treated with etanercept, one of three drugs used to treat the condition.

The other drugs are adalimumab and infliximab and all fall under the same umbrella of biologic immunosuppressants.

She said: "The trial was meant to be just for a year but it kept getting extended.

"There were risks taking part, obviously, but now I don't look back, it's just a wonder drug for me."

But since the trial ended in July, Bromley PCT have refused to continue funding the drug, which costs around £9,000 a year.

Mrs Eames had her last twice-weekly etanercept injection on Friday and now faces a return to the agony she experienced previously.

'I'm terribly worried, petrified'

Mrs Eames, 55, said: "It's too early to tell how this is going to affect me, but I'm hoping laughter and distraction will get me through some of the pain.

"I'm terribly worried, petrified, I'm trying my hardest not to let myself get into that state.

"I'm very frightened about the prospect of going back to how life was.

"They are not only making me suffer, they are making my adult sons suffer, my mother is suffering and it's not fair."

In its refusal to fund the drug, the Trust said: "Entanercept is not routinely funded for Bromley residents with ankylosing spondylitis.

"Patients who begin treatments as part of a clinical trial should not have any increased access to NHS funded drugs/ treatment over other local residents.

"In conclusion, the group agreed that the PCT cannot pick up the costs for a drug following a clinical trial.

"This is not in the PCT's remit. The drug company has funded the drug so far and therefore should continue to fund it."

'This is not in the PCT's remit'

The National Institute for Clinical Excellence (NICE), which advises the NHS on how to spend to get the best result for patients, has issued draft guidance approving the use of etanercept and adalimumab for treatment of ankylosing spondylitis, but not infliximab, due to the high costs associated with it.

Official endorsement of etanercept and adalimumab are expected in due course.

Dr Andrew Bamji, who is the president of the British Society for Rheumatology at Queen Mary's Hospital, in Sidcup, has been treating Mrs Eames for more than 20 years.

Dr Bamji said: "Since Mrs Eames went on the drug she has been transformed.

"Before she went on it she was suicidal. She is still stiff now, but the fatigue and depression have gone.

'To deny her further treatment...is unreasonable and unethical'

"To deny her further treatment without clinical grounds is in my view unreasonable and unethical.

"I see no moral difference between a patient receiving a drug as part of a trial or otherwise. It is a licensed drug, and it works. Therefore it seems to be a denial of good medical practice to refuse to fund on financial grounds alone.

"NICE recommends the use of etancercpet and adalimumab...the guidelines do not recommend infliximab.

"As a result the recommendation of the other two has been held up while negotiations occur to either unbundle the three drugs or to await an appeal on infliximab.

"Either way, it is inevitable that NICE will issue guidance to allow etanercept, it is only a question of when.

"Thus is seems inappropriate for Mrs Eames to suffer from the withdrawal of effective treatment when it will anyway be reinstated in due course.

"What's more, I have three patients in Bromley on the drug and in clinical terms the situations are identical."

Dr Bamji formally objected to the PCT's decision on Friday (September 14) He added: "In Gillian's case the other anomaly is they are making a fuss because she was on a drug trial and she should have been told after the drug trial that she wasn't getting any more.

"It is unreasonable that someone who has benefited from a drug should be taken off it.

"It is the right thing, why should they discriminate?"

A spokesman for the Bromley PCT said: "We will consider her appeal...it would be inappropriate to comment further at this stage."

  • Mrs Eames and Dr Bamji both appeared on the ITN London News last week, to draw attention to her plight.

To see the segment, vist the National Ankylosing Spondylitis Society at nass.co.uk/news.htm

Mrs Eames has also began a petition on the Downing Street website, which has gathered nearly 1,300 signatures, and can be accessed via the same link.