Recent Cause Activity
Updated: The cause has reached 500 members.
I have joined this group because my daughter has both ankylosing spondylitis and rhumetiod arthritis, she is currently on Remicade and we are looking for different
ways to help with the pain.
A huge thank you to all that supported us with this disease by signing petition also for helping us to raise funds to star CASP Coalition of Ankylosing Spondylitis Patients
www.thecasp.net
A huge thank you to all that supported us with this disease by signing petition also for helping us to raise funds to star CASP Coalition of Ankylosing Spondylitis Patients
www.thecasp.net
Good news for those in England.
http://www.nice.org.uk/guidance/index...
Thats nice isn;t it :)
(Thanks to Gill who emailed me earlier)
Good news for those in England.
http://www.nice.org.uk/guidance/index...
Thats nice isn;t it :)
(Thanks to Gill who emailed me earlier)
Health
Bone Diseases: Medical Treatments
All Written Answers on 5 Mar 2008 « Previous answer Next answer »
Mike Hancock (Portsmouth South, Liberal Democrat) | Hansard source
To ask the Secretary of State for Health if he will make it his policy to issue guidance on the administering of enbrel and humira to people diagnosed with ankylosing spondylitis.
Ann Keen (Parliamentary Under-Secretary (Health Services), Department of Health) | Hansard source
The National Institute for Health and Clinical Excellence (NICE) has received two appeals against its final appraisal determination on adalimumab (brand name Humira), etanercept (brand name Enbrel) and infliximab for the treatment of ankylosing spondylitis. Final guidance will not be published until the appeals have been heard.
Funding for licensed treatments should not be withheld because guidance from NICE is unavailable. In December 2006, we issued refreshed good practice guidance which asks national health service bodies to continue with local arrangements for the managed introduction of new technologies where guidance from NICE is not available at the time the treatment or technology first becomes available.
Health
Bone Diseases: Medical Treatments
All Written Answers on 5 Mar 2008 « Previous answer Next answer »
Mike Hancock (Portsmouth South, Liberal Democrat) | Hansard source
To ask the Secretary of State for Health if he will make it his policy to issue guidance on the administering of enbrel and humira to people diagnosed with ankylosing spondylitis.
Ann Keen (Parliamentary Under-Secretary (Health Services), Department of Health) | Hansard source
The National Institute for Health and Clinical Excellence (NICE) has received two appeals against its final appraisal determination on adalimumab (brand name Humira), etanercept (brand name Enbrel) and infliximab for the treatment of ankylosing spondylitis. Final guidance will not be published until the appeals have been heard.
Funding for licensed treatments should not be withheld because guidance from NICE is unavailable. In December 2006, we issued refreshed good practice guidance which asks national health service bodies to continue with local arrangements for the managed introduction of new technologies where guidance from NICE is not available at the time the treatment or technology first becomes available.
Lee
Lets hope you get the funding to go on Anti-Tnf.
Please contact me if i can help in anyway
gillian.eames@sky.com
Keeping everything crossed for youx
Lee
Lets hope you get the funding to go on Anti-Tnf.
Please contact me if i can help in anyway
gillian.eames@sky.com
Keeping everything crossed for youx
Wow, should have read Gillians recent announcment, it answered neary all my questions :)
Wow, should have read Gillians recent announcment, it answered neary all my questions :)
Just come back from the Hospital after a good chat with the Biologics Nurse Specialist they definetly definetly agree that I need Anti-TNF I have info on the three treatments I just need to get back to her with the ne to go with and then they will put in a special application.
She mentioned that NICE is meeting this month to discuss approval for Remicade and Enbrel for AS sufferers, I took a quick look on the NICE website but found it difficult to find anything, anyone have any more info on this?
Even though she could not say if my PCT would approve it she did indicate that PCT's do not have to have NICE approval to give funding, and are now unable to use NICE as a reason not to give treatment.
Lets see what happens.
Best of luck to all of you that are awaiting answers regarding treatment.
Just come back from the Hospital after a good chat with the Biologics Nurse Specialist they definetly definetly agree that I need Anti-TNF I have info on the three treatments I just need to get back to her with the ne to go with and then they will put in a special application.
She mentioned that NICE is meeting this month to discuss approval for Remicade and Enbrel for AS sufferers, I took a quick look on the NICE website but found it difficult to find anything, anyone have any more info on this?
Even though she could not say if my PCT would approve it she did indicate that PCT's do not have to have NICE approval to give funding, and are now unable to use NICE as a reason not to give treatment.
Lets see what happens.
Best of luck to all of you that are awaiting answers regarding treatment.
Lee can you get your friends and family to sign petition and pass on to others it is open intill June 2008
http://petitions.pm.gov.uk/ANTI-TNF/
After signing you will get email back that must be activated
Both me and my little brother has SA. He is suffering since he was 17... now 40 years old.. he lives in Denmark, and the doctors never found out... untill 3 years ago.. He has bin in a study with Humira. he takes it.. but it does´nt help that much. I guess it is just too late. By me it started at age 20... I´m now 44, and first 2004 it was diagonized, because I got a new doctor, who asked if I ever was tested for HLA-B27... and it was positive.. I´m not on TNF, not yet. It is for me the last step... and I get along quite well, thanks to my osteopath adn physioterapist, who is doing a good job, I live in Germany, thats why I have the possibility to see him every week. In Denmark it is not that easy to get the healthv care system to pay and see the need for an AS patient. Sometimes I have to take cortison, but I try to get along witH nsar, do sports that still are possible. I´m quite positive and keeps it going even if I have days, where I feel like as if a truck has hit me. So... thats why I am joing this cause.