N.I.C.E. wont fund my new medication drug trial

alanthemanc

It was supposed to be sorted. I was due to see a consultant who was due to give me the go ahead for a new drip induced drug, new to the market.
Now there has been a row between several health departments, and Iv'e just recieved a letter saying it doesn't come under N.I.C.E. guidelines for funding.
I was due to have tests this week, but it sounds like unless the funds come from elsewhere, I could be in for a long wait.
It seems I've had too many drugs ie, ( retuximab, infliximab, Embrerel, Humira, etc , etc, and non of them worked.
I seem to have been treated as a hopeless case, never mind, Alanthemanc

frogmorton

Never mind :shock:

Never mind?

Oh Alan

that is bad news....can you appeal at all or anything?

Have you to stay on what you are on now?

I am so sorry - you were so hopeful too :x

I think I am a bit cross on your behalf.

Are you going to respond to the webmangers request fro people from Manchester?

Love

toni xx

alanthemanc

Frog
Who knows?
From what I can gather, N.I.C.E., are saying that my record of success with infused drugs is not good. ( it isnt, but it is not my fault, they just didn't work )
So unless my local Health Authority fund this for me, I'm up the creek without a paddle.
I've not heard anything off them for 5 weeks so I presume they are thinking about it.
I'm currently on 20mg of Metho. pluss loads of other stuff.
I may contact Helen about her project / thingimibob
Alanthemanc

julie47

oh dear that is sad news

I hate the word expensive, I get that everytime I se my gp. :x

I have my fingers crossed that the HA will fund it for you.

juliepf x

barbara12

Oh Alan I am so sorry , I know you were hopeful for the new drug...I dont like the word nice....horrible would be better.
I do hope your GP appeals, many have and won.
Please let us know how you get on.
Barbara x

dreamdaisy

The unfairness of this has me seething: as you say it's not your fault that you have not responded well to the other anti TNFs - they give those drugs such hype but I am certain that the majority of people don't get far with them, it's reserved for a lucky few who do respond well to mouse proteins. Grrrrrr. I thought I read recently that NICE now no longer have any say in funding matters, it's down to the local health authority: is there an appeals procedure? I am so sorry alanthemanc, it's not fair. I hope you do hear from your authority soon - and with some good news. DD

Bookseverywhere

Really sorry to hear this. It seems that there are medications out there that people can't get purely because the authorities won't provide the funding.

I hope the Health Authority can come up with the funding.

Best wishes,
Kevin.

salamander

hi Alan, You do know that NICE are being abolished? Maybe your consultant knows something about that and how funding will be obtained in the future. It's worth investigating.

alanthemanc

Thanks everyone for your replies, who knows if I would have responded to the new drug, ( Interloken, I think ), you never know. I have not responded well to the others, and there are not too many others I can try, and my joints are getting worse.
I am looking for a wonder drug, like everyone else on here. Alanthemanc

speedalong

Oh ALanthemanc, this is not at all fair or right. You need to appeal ...though I have no idea how. Would your consultant be able to advise how? Perhaps you need to involve the press. This could be the drug that works for you ... Have your tried the AC helpline to see if they have any ideas?

Speedy

tkachev

I am very sorry to read about your experience Alan. Who knows this could be the one that works for you. Don't give up as it is early days and it might get approval as time goes on. Keep on the case.

Best wishes
Elizabeth

alanthemanc

Speedalong
tckachev
Thanks for your support, after youv'e been on every drug under the sun to improve your arthritis, and nothing has any significant effect, you do start to wonder if your a bit cursed.
I remember 35 years ago, they said that within 20 years, there will be a cure, were still waiting, arn't we. Never mind eh
Alanthemanc

dreamdaisy

I don't wonder anymore, alan, I know it for a fact that I am not destined to be one of the lucky ones. Once that fact is accepted, life is much more straightforward and the highs (infrequent) and much more common lows are less extreme. (Mostly.) I hope that an answer can be found for you, tho. I do wonder if the drugs companies are really that interested in developing a cure tho - think of the money they would lose if they did. DD

janie68

Alan

Why do they think they have the right to write you off? I am going to decide on some treatment on Wednesday, cimzia, tocziliumab or something begining with A. I got told by a nurse that I would only have so many bites of the cherry. For &**$ sake, I'm only 39, what right do they have to say, sorry that's it? I felt hopeless after that appt and I will not accept it.

Negativity is not helpful, and is completely wrong. I'm a nurse myself and to say things like you and I have experienced is unacceptable. I'll just fall off my soapbox now.

There are clinical trials as well, has that been considered for you? I would have thought you would be a prime candidate for the research team to crack so to speak!

Good luck, let us know any updates,I will be very interested

Janie

alanthemanc

Janine
Yeh, it's not over yet, but I feel like the England World Cup bid, hopeful, but doomed to failure.
May be the funding will come, but I'm not holding my breath.
Thanks for your support anyway. Alanthemanc

dorcas

Hi Alan

I'm sorry to read of your situation with additional biologics funding not being agreed. :?

What's your rheummy saying about it? As N.I.C.E are no longer the decision makers, perhaps you rheummy would have the necessary clout to advocate successfully on your behalf with the local health trust?

I'm stuck in the same position as you Alan after 'only' three anti-tnfs... but it's not just a funding issue but the limitations imposed regarding what biologic treatments folks with PA can access.

I have done a bit of research and there is a new drug, golimumab (simponi) which I am hoping that, with persuasion, I can access through a clinical trial....

Please let us know how you get on Alan....good luck!

iris xx

alanthemanc

Dorcas
Yeh , same boat eh. I've heard nothing in the last 6 - 7 weeks, and probably will hear nothing now until the New Year, one way or another ( thats the way Hospitals work, if youv'e heard nothing half way through December, forget it. )
I suppose it's not out of the question, but I just don't know for sure, and if this one fails, I might as well survive on painkillers for the rest of my years on earth.
Good luck Dorcas, hope we both get somewhere this time, thanks for your support, Alanthemanc.

skezier

Hi Alan,

Sorry I am late I have tin cans and a bit of string for a connection just now....

I get so cross cus they don't help enough. There are things to try and you can't have them.... tis all wrong to me and I really hope you can find a way to get what you need and be helped. tis not much to ask is it really?! Good luck and keep on at the rumo... I so hope you can break the stalemate. Cris x

alanthemanc

Skiezer
Yeh, I don't really know where I stand at the moment, I feel it's 50/50. I remember my Rhumey said there was one other lady who has had quite good results with this drug, and she struggled with the others, so it might still be on.
Thanks for you support. hope you can sort out your connection, mine has been ropey for months, technology eh. Alanthemanc