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."
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for Clinical Excellence (NICE), which advises the NHS on how to spend to get the best result for patients, has issued draft guidance approving the use of etanercept and adalimumab for treatment of ankylosing spondylitis, but not infliximab, due to the high costs associated with it.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.
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."
Mrs Eames and Dr Bamji both appeared on the ITN London News to draw attention to her plight.
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.
1:28pm Tuesday 27th November 2007
Print 
Email this 
CommentPosted by: Elena Andonova on 7:07pm Tue 27 Nov 07
I think what Gillian Eames has been doing, fighting for her life and that of other people, vicitms of the same disease, deserves all the respect and admiration one can have for brave people. I support her and hope her initiative to help other patients get funding for the drug is successful.
I think what Gillian Eames has been doing, fighting for her life and that of other people, vicitms of the same disease, deserves all the respect and admiration one can have for brave people. I support her and hope her initiative to help other patients get funding for the drug is successful.
Posted by: Andy Campbell, London on 7:12pm Tue 27 Nov 07
The cost of treatment where such treatment make a vast difference to the patients life should not be the primary factor in making the decision as to whether it should be withheld or not.
The cost of treatment where such treatment make a vast difference to the patients life should not be the primary factor in making the decision as to whether it should be withheld or not.
Posted by: Angie on 7:29pm Tue 27 Nov 07
Gill
You're a stong woman and we all adore you fir fighting the good fight!!
Good luck for the future for you and your sons
God bless
Angie ****
Gill
You're a stong woman and we all adore you fir fighting the good fight!!
Good luck for the future for you and your sons
God bless
Angie ****
Posted by: Syreeta Howard on 8:18pm Tue 27 Nov 07
Well done, your very brave
Well done, your very brave
Posted by: Brendan McAreavy, N.Ireland on 9:11pm Tue 27 Nov 07
Excellent result Gill and well deserved. Your determination has paid off and is an example to other people who find themselves being failed by bureaucrats.
Excellent result Gill and well deserved. Your determination has paid off and is an example to other people who find themselves being failed by bureaucrats.
Posted by: Phil Street, Bristol on 1:24am Wed 28 Nov 07
Gill,
[bold]Congratulations[/bold] You deserve this drug, having put the needs of others above your own when going onto the original drug trials, and then for the pct to prat around using excuse after excuse and even more bull@#&t than any self respecting cattle farmer could ever produce, they have the ordacity to drag out the final announcement, putting you through hell and even more stress, if that was humanly possible with what you have endured throughout, as us sufferers are only to aware of [bold]STRESS AGGRAVATES THE DISEASE[/bold] every member of the pct involved in your case should hang their heads in total shame.
You are a true credit and inspiration for everyone with AS running a very dignified and passionate campaign, such a pity that apathy among society especially those with AS who have failed to support you for something that could affect them, but I guess it is a case of “I’m alright jack” they will simply wait for others to do the work and they reap the rewards.
I am so happy for you and that I have been able to help you even in such a small way, we are all in this together.
Have a good rest you need it, then look forward to your campaign to increase the awareness of this bloody awful disease, there is supposed to be approx 200,000 people within the UK with AS they must be living in isolation, together we can have a very loud and powerful voice and finally start to get this chronic disease recognised within society.
Once again Congratulations, you are one in a million!!!!!!!!!!!!!
!! Phil
Gill,
Congratulations You deserve this drug, having put the needs of others above your own when going onto the original drug trials, and then for the pct to prat around using excuse after excuse and even more bull@#&t than any self respecting cattle farmer could ever produce, they have the ordacity to drag out the final announcement, putting you through hell and even more stress, if that was humanly possible with what you have endured throughout, as us sufferers are only to aware of
STRESS AGGRAVATES THE DISEASE every member of the pct involved in your case should hang their heads in total shame.
You are a true credit and inspiration for everyone with AS running a very dignified and passionate campaign, such a pity that apathy among society especially those with AS who have failed to support you for something that could affect them, but I guess it is a case of “I’m alright jack” they will simply wait for others to do the work and they reap the rewards.
I am so happy for you and that I have been able to help you even in such a small way, we are all in this together.
Have a good rest you need it, then look forward to your campaign to increase the awareness of this bloody awful disease, there is supposed to be approx 200,000 people within the UK with AS they must be living in isolation, together we can have a very loud and powerful voice and finally start to get this chronic disease recognised within society.
Once again Congratulations, you are one in a million!!!!!!!!!!!!!
!! Phil
Posted by: Sandra Curran, Exmouth, Devon on 11:39am Wed 28 Nov 07
Gillian,
For you to continue fighting whilst being continually knocked back and in so much pain, is really remarkable and inspirational, Im so happy for you and your family and am extremely impressed that you will continue to fight for others.
What a woman!! xx
Sandra x[bold]bold[/bold]
Gillian,
For you to continue fighting whilst being continually knocked back and in so much pain, is really remarkable and inspirational, Im so happy for you and your family and am extremely impressed that you will continue to fight for others.
What a woman!! xx
Sandra x
Posted by: Sean Johnstone, Essex on 12:35pm Wed 28 Nov 07
Gill,
Congratulations, this is great news. Having been kept in 'the loop' during your ordeal, I know how much this meant to you.
Firstly, this medication is required for your continued standard of life, and is cheaper to the NHS than other NICE-approved drugs. I will keep my fingers crossed that NICE recommendations will not overturn your result here.
I, as ever, wish you all the best in this, and future battles.
Sean Johnstone
Gill,
Congratulations, this is great news. Having been kept in 'the loop' during your ordeal, I know how much this meant to you.
Firstly, this medication is required for your continued standard of life, and is cheaper to the NHS than other NICE-approved drugs. I will keep my fingers crossed that NICE recommendations will not overturn your result here.
I, as ever, wish you all the best in this, and future battles.
Sean Johnstone
Posted by: Clare, Gill's neice, Basingstoke on 1:26pm Wed 28 Nov 07
Although I am delighted that Gill has finally got her funding I think it is disgusting that it even got to the point that Gill had to campain for it and the PCT 'granted' permission for Gill to continue with the drug that allows her to live some sort of normal life. They abused their position in making her suffer this way and I only hope they are bought to task over it.
Although I am delighted that Gill has finally got her funding I think it is disgusting that it even got to the point that Gill had to campain for it and the PCT 'granted' permission for Gill to continue with the drug that allows her to live some sort of normal life. They abused their position in making her suffer this way and I only hope they are bought to task over it.
Posted by: Scott Innes, Bromley on 6:58pm Thu 29 Nov 07
Well done Gill you showed them bureaucrats that life is worth more then money in their banks!!!
This will hopefully stretch far and wide, and help others suffering from this terrible disease.
x
Well done Gill you showed them bureaucrats that life is worth more then money in their banks!!!
This will hopefully stretch far and wide, and help others suffering from this terrible disease.
x
Posted by: hannah, cornwall on 1:30pm Fri 30 Nov 07
Gill...you are a woman we are all proud to know.You stood up for not only your rights but other suffers too.I wish you all the best in life,and hope you can now enjoy life more.
Gill...you are a woman we are all proud to know.You stood up for not only your rights but other suffers too.I wish you all the best in life,and hope you can now enjoy life more.
Posted by: Mark Donnelley, Bromley on 3:19pm Fri 30 Nov 07
Hi I am Gillian's oldest son and just want to say thank god Bromley Pct finally give into my Mum and granted her the medication she requires. I am so so happy for my Mum as it means now she can lead as a normal life as she can and enjoy life without so much pain to bear!
I am very happy the Pct did allow my Mum to have her medication, also the Pct should be happy as my Mum was not going to give in the fight and she would have won, honest as she always does :o)
My Mum has put a lot of work into winning this case which has not helped her health and I am sure she would have ended up in hospital through exhaustion if she had to keep on fighting.
I would like to thank everyone who has helped my Mum in the last few months with fighting the Pct to turn this case round that being her family, friends, doctors and the media companies who helped, many many Thanks!!
This is the best christmas present my mum and her family could have wished for in the whole world, more than any expensive present you could have thought of!
I am so proud of my Mum fight against the Pct for what she deserves and so so glad she won! So well done Mum for winning and well done for being the best mum in the World!
So my Mum produced one miracle in defeating the Bromley Pct, now can she produce two more, in getting Fifa to put England in Euro 08 as a favour and make sure Palace win the Championship, :o)
Anyway 3 cheers for my Mum!!
Hi I am Gillian's oldest son and just want to say thank god Bromley Pct finally give into my Mum and granted her the medication she requires. I am so so happy for my Mum as it means now she can lead as a normal life as she can and enjoy life without so much pain to bear!
I am very happy the Pct did allow my Mum to have her medication, also the Pct should be happy as my Mum was not going to give in the fight and she would have won, honest as she always does :o)
My Mum has put a lot of work into winning this case which has not helped her health and I am sure she would have ended up in hospital through exhaustion if she had to keep on fighting.
I would like to thank everyone who has helped my Mum in the last few months with fighting the Pct to turn this case round that being her family, friends, doctors and the media companies who helped, many many Thanks!!
This is the best christmas present my mum and her family could have wished for in the whole world, more than any expensive present you could have thought of!
I am so proud of my Mum fight against the Pct for what she deserves and so so glad she won! So well done Mum for winning and well done for being the best mum in the World!
So my Mum produced one miracle in defeating the Bromley Pct, now can she produce two more, in getting Fifa to put England in Euro 08 as a favour and make sure Palace win the Championship, :o)
Anyway 3 cheers for my Mum!!
Posted by: Lee & Zoe, Reading on 10:38pm Fri 30 Nov 07
[italic]The 1st thing to say is a HUGE well done to my mum-we are so proud of what you have done and you done it so well....At long last Bromley PCT finally come to there senses and granted my mum the drug which to her is a wonder drug-this is going to help my mum lead a better life in less pain and for that we are all greatful. It should never of come to this-after all the NHS are there to look after peoples health but it seems to be all money orientated with them!! Mum you have had a huge amount of support fom family and friends and this hows what a wonderful person you really are and the fact that you are going to continue making awareness of AS shows this. So mum a massive well done to you and your fight and determination has gone a long way......with love to you fom Lee & Zoe.xx[/italic]
The 1st thing to say is a HUGE well done to my mum-we are so proud of what you have done and you done it so well....At long last Bromley PCT finally come to there senses and granted my mum the drug which to her is a wonder drug-this is going to help my mum lead a better life in less pain and for that we are all greatful. It should never of come to this-after all the NHS are there to look after peoples health but it seems to be all money orientated with them!! Mum you have had a huge amount of support fom family and friends and this hows what a wonderful person you really are and the fact that you are going to continue making awareness of AS shows this. So mum a massive well done to you and your fight and determination has gone a long way......with love to you fom Lee & Zoe.xx Posted by: Jenny, dartford on 3:05pm Sat 1 Dec 07
The news of Gill winning her campaign for a better and pain free future is fantastic! well done Gill this just goes to prove its always worth fighting for something you believe in and very much deserve!
you are an inspirational lady and im proud to be a part of this and a friend too. xx
The news of Gill winning her campaign for a better and pain free future is fantastic! well done Gill this just goes to prove its always worth fighting for something you believe in and very much deserve!
you are an inspirational lady and im proud to be a part of this and a friend too. xx
Posted by: Stephen Foster, London on 7:02am Mon 3 Dec 07
Congratulations to Gill for not allowing the council to get away with putting money before someones life, despite the evidence being clear the drugs were working so well for Gill.
Hopefully this will give others the encouragement to fight their cause themselves.
Congratulations to Gill for not allowing the council to get away with putting money before someones life, despite the evidence being clear the drugs were working so well for Gill.
Hopefully this will give others the encouragement to fight their cause themselves.
Posted by: Shirley & Brian, Beckenham on 8:32pm Mon 3 Dec 07
Many Congratulations Gill and we're so pleased that at last you're getting your drugs prescribed and all the worry and heartache about whether or not you'll be able to continue on the drug has gone. It's scandalous that you should have been put through all this trauma and stress as we know that it's been unbearable at times for you, not knowing if you'll be able to continue on the drug which has helped you to live a more normal life. Anyway, stress aggravates your disease so the PCT ought to be ashamed of themselves and you've been marvellous to carry on campaigning for yourself and others throughout all the setbacks. We're so proud of all that you've done Gill and are continuing to do with your campaign. You're an extremely strong and brave person and are a great example to everyone. Take care and have a bit of a rest now. xx
Many Congratulations Gill and we're so pleased that at last you're getting your drugs prescribed and all the worry and heartache about whether or not you'll be able to continue on the drug has gone. It's scandalous that you should have been put through all this trauma and stress as we know that it's been unbearable at times for you, not knowing if you'll be able to continue on the drug which has helped you to live a more normal life. Anyway, stress aggravates your disease so the PCT ought to be ashamed of themselves and you've been marvellous to carry on campaigning for yourself and others throughout all the setbacks. We're so proud of all that you've done Gill and are continuing to do with your campaign. You're an extremely strong and brave person and are a great example to everyone. Take care and have a bit of a rest now. xx
What are these links for?
If you liked this article and would like to share it with others on the web who might be searching for good content we've made it easy for you to do it.
At the bottom of all articles, you'll see links to six sites. These sites - commonly called 'social bookmark' or 'social news' sites - have large communities of web users who share and rate interesting, useful and fun things on the web.
Clicking the links will automatically add the address of the story you are reading to one of these sites, letting you share it with others. Each site will ask you to register to share stories. Registration is free and once a member, you can store, recommend and search for stories that interest you.
More on Digg
More on del.icio.us
More on Furl
More on reddit
More on NowPublic/
More on Yahoo!
