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With only two biologic therapies now available to most RA patients, those who fail on both will be put onto palliative care using large doses of steroids with significant side effects and which have much less impact on the disease itself. For approximately 25 – 30% of patients, with sero-negative RA, rituximab may not be an option leaving these patients with just one treatment option for their disease, thus discriminating against this particular patient population.
· NICE’s decision not to recommend sequential use of Anti-TNFs and their decision to reject abatacept has left patients with just two treatment options.
· While NRAS plan to appeal against the decision they fear that the FAD will become Guidance over the summer, giving PCTs the excuse they need to severely restrict access to these life changing drugs.
· In relation to patient involvement in NICE decisions, Ailsa comments:
“Another reason the patient voice has minimal if any effect is because in reality the economic modelling only considers a minute number of factors that take into account the real costs of the patient with RA and I am not referring to work related disability here, which we are well aware is outside the current remit of NICE.”
“The government hail NICE as an example to other countries, for patients with RA it is the ultimate insult. NICE are denying patients clinically effective drugs, readily available to people with RA across Europe, that can make a real difference to the lives of patients in this country.”
For more information, please contact:
Jon Pike, Press Officer for NRAS
Tel: 07989 850 195 |
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This article is listed within News | | |
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Pinny - I'm so sorry.
Hugs and more hugs,
Pip i feel so bloody useless, its like they just dont care any more, there are so many people out there, like me who are sero neg. Theres all these wonderful people who take years of research to find new things to help us and people who put themselves through the trials just for NICE to come along and wipe away any possible miracle to happen. Lisa, I get e-mail press on this almost daily. There is a complaint board or some sort of "arthritis foundation" forgot the name, where you can file a complaint. Several people have been going to their local newspaper, which might or might not help you too. Almost daily, I get newspaper articles about it.
Sorry.Thanks Bird Girl, I have signed a petition on the arthritis foundations board NRAS that they are sending to parliament too. I have just emailed my local MP and the downing street ( for all the good it might do) I think of all the other people who are sero neg and have been fighting this disease for years with the hope of a new med that will help them. I had been accepted for rutiximab but as i had a minor op to have done and then a few infections i didnt get my infusion but went today thinking as i had been approved it it would be soon, then to be told NO, It was like someone had knocked the wind out of my sails. I have been virtually housebound for 2 weeks, everytime we planned an outing i had to cancel as my RA is going into overdrive, so i feel a bit down at the momentsnow owl- the mtx isnt working anymore that why we were adding the rutiximab
hugs Lisa, The Ankylosing Spondylitis society in the UK is also mounting protests, you could probably join them too. They are another inflammatory arthritis, for them they are only allowed one TNF and if that one doesn't work--too bad. They aren't even allowed to try a second one, and no Remicade which helps Crohns too.
Its terrible I am so sorry. I have used all three TNF and am waiting to try either Rituxin or the new one that just came out. My doctor put me back on Humira after it stopped working and it worked again-perhaps you could try that. I did have another TNF before trying it again. She also put me back on MTX and the combo gave me another year of relief. I am staying on Humira and MTX while I wait as the doctor feels the combo is better than nothing. So perhaps you can retry what you already used?
Edited to mention, those news articles are about a snooker (sp?) player speaking up.Bird Girrl2008-08-13 10:17:30That STINKS! So sorry. Does Sero Negative mean the RF factor doesn't show up or do no inflammation markers show up?NICE haven't got a clue on what people need, in the end it all comes down to money. If they managed the NHS a bit better it probably wouldn't be a problem.
I haven't gotten to stage of needing these drugs yet but someday soon I might, and I would like to have all treatments available. I have started to notice some of my fingers bending to the side and getting pretty worried about that.
NICE have also denied cancer sufferers access to a new drug on the NHS. This could be a life saving treatment, so my heart goes out to them. Its like handing them a death sentence. I am trying to get a meeting with my MPThe Ontario, Canada arthritis foundation is suing for discrimination, because they are allowing Diabetics expensive meds but not arthritis sufferers.
Pinny, I'm so sorry. That is just so wrong and unfair. It's common knowledge that sero-negative does not mean you are seriously ill, you just present in a different way. They KNOW that so how can they possibly justify this decision. Thankfully, there are battles on many fronts being fought with regard to this idiocy, so I'm hopeful that in time this serious error will be rectified. Hang in there, help is on the way. pin - so sorry, and it should be a warning to everyone in here about how shaky their coverage (or non-coverage) is under this broken world-wide health care system.
*Edited to remove the word American as I missed that pin is from over there :) I was getting it mixed up with Jesse, the American, having her MTX (chemotherapy actually) cut out by her American insurance company. Buckeye, will this satisfy you? Cathy justsaynoemore2008-08-14 18:03:09JSNM
Pin is in the UK. Its their govt run healthcare system that has changed the rules, due to cost, that now prevent her from getting her medsI read all the American government debates you have on here about your different presidential candidates etc, our elective party is no better but maybe with the next elections they will improve drug funding for the sick ....................i wont hold my breath thoughPin, I'm sorry to read your post. I have a question. How many people on here are negative and have erosion and damage? Just curious. I'm negative and have erosions and damage...yes we can always hope that those plonkers who call themselves politicians will improve the health care system....but not if you overeat, drink or smoke. Then you might be denied it altogether.
Well i'm buggered sitting here eating chocolate and drinking wine!
...well at least I don't smoke. I am sorry, Pinnie! I hope you can get your infusion again.
Much hugs! So if people who have erosion and damage and are documented negative, how can your government deny this life saving treatment? Oh, and not one person here in the USA better mention the.....socialized medicine word.
Again, I'm probably wrong here but I read your initial post and it got me thinking about the different classes of biologics.
Bob H. Its not an anti tnf, and the reason they are denying me the ritiximab is because i am seronegative RA, They will give positive RA sufferers Rutiximab plus the one Anti tnf and thats it. Its so confusing.It seems everywhere that money counts more than the sick...Unless of course it is you or a loved one, people just do not 'get' that it may very well be them tomorrow. Only when it hits home ....then it is too late. People really need to change their minds!
Wow Pin.....that's awful. Would it be terrible to hope you turn positive?? Linncn2008-08-14 17:04:24pin, sorry I didn't notice you were from the U.K., me bad, I edited my post.
And I am starting to wonder if this is just a broken health care system world-wide. Starving nations, no help, but we can consume consume consume food.
I still care, like you. Cathy Oh, I got it now. The denial is being based on the fact that you are negative for rheumatoid factor. Well, that's just a totally reasonable deciding factor on whether people should get medication that will help them. Check on the broken health care system worldwide. I'm beginning to get a tad bitter from the shafting I'm getting and when I see that I'm not the only one it just doesn't help any. I'm terribly sorry about what you are going through but if it's any comfort at all know that you aren't alone.
Bob H. I think id rather be positive than sero neg. At least i and others may get a chance at trying something else. At the moment MTX is the only option i have with a shot in the bum of steroids four times a year. My Rheumy is so frustrated with the whole decision, he is going to fight this for all of us.
Marian- you are so right, no one gets it until it affects them directly, I wonder how many people on the NICE decision board have RA or have anyone in their families who do? [QUOTE=lorster]Pin, I'm sorry to read your post. I have a question. How many people on here are negative and have erosion and damage? Just curious. [/QUOTE]
that's me... sero=negative w/ erosions and damage...
I am so very sorry, Pin.....
That is the worst news... How horrid and unfair!!
I hope that your actions on your behalf will make a change...
My thoughts are with you. Pin, have you tried getting a different diagnosis? My RD changed mine so I could try Orencia. With the negative RA test, you really could have PsA because a certain amount of people have no skin issues.
To Crohns (http://fdanews.com/newsletter/article?issueId=11863&articleId=109473)
or maybe PsA or AS (you'll be able to try another TNF)?
I understand your desparation I am waiting for a new one to come on the market.That's another thought for you. See if the docs can run some more tests and maybe find a different diagnosis. I have JRA and, like you, I too am seronegative. I've never had an issue getting insurance companies to approve a drug. Just issues getting them to actually pay for it. (medicare part-D stinks)
Bob H. Sorry Pin, that just bites! Hopefully with the help of your rd, you can get it worked out.
I will have you in my prayers. That just seems so unfair!
take care
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