1:28pm Tuesday 27th November 2007
By Sara Nelson
A MOTHER-OF-TWO who took on her PCT and won funding for drugs to treat her spinal arthritis has vowed to keep fighting for fellow sufferers.
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 refused to continue funding the drug, which costs around £9,000 a year.
Mrs Eames had her last twice-weekly etanercept injection in September and was forced to battle pain which left her "nearly suicidal".
But after appealing the matter, Mrs Eames was informed by the Trust yesterday (November 26) that it will continue to fund the drug for her.
Mrs Eames said: "I think the news is fantastic, it means everything to me, but on the other hand I am disappointed because I have not really achieved anything for any other sufferers.
"But my doctor says we have set a precedent, if I can do it so can others.
"I'm going to carry on raising awareness of this disease for all the other people who are fighting for funding for this drug, I will not shut up."
Tomorrow (November 28) Mrs Eames will attend a dinner at the House of Commons where she will speak to ministers about the disease.
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for Clinical Excellence (NICE), which advises the NHS on how to spend to get the best result for patients, has issued draft guidance approving the use of etanercept and adalimumab for treatment of ankylosing spondylitis, but not infliximab, due to the high costs associated with it.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.
Yesterday, a Trust spokesman said: "The PCT has agreed to fund etanercept for Mrs Eames until the NICE is published.
"Her case will then have to be reviewed in the light of the NICE recommendation.
"This decision is related to this individual case only."
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 described the Trust's initial refusal to fund the drug as "unreasonable and unethical".
On hearing the news the decision had been reversed, he said he was "absolutely delighted and relieved that common sense had finally prevailed."
Mrs Eames added: "I feel that the very people who should be taking care of me couldn't care tuppence about my health or what I went through.
"It just all boiled down to money and my life is worth more than this drug costs."
To see the segment, vist itvlocal.com/london/news/?player=LON_News_26&void=123136
Mrs Eames has also started a petition on the Downing Street website, which has gathered more than 1,600 signatures, and can be accessed via the same link.
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