Abatacept refused due to cost?

[AMDP]

As I have tried almost everything else and nothing has halted this horrible disease I was prescribed Abatacept by my specialist only to have my local trust refuse to give it to me on the grounds of cost. I have written a letter of appeal but what else can I do?

[Philip]

What a bunch of no-goods , I hope you can get this sorted out, what is your bad-health trust?

[Hidden]

Hi!

Before people start running down their local health authorities and 'naming and shaming' I think it appropriate to add that biologic drugs are extremely expensive and these are therapies that are used after much consideration has been given to any alternatives. I'm sure you know that already! NICE guidelines suggest a 'Sequence of Therapy' recommending a specific order for the prescription of biologic therapies and it is unusual for authorities to sidestep this (but see review detail below)..

I'm a bit confused because I understood that your diagnosis was still 'up in the air' with a possible crossover with Scleroderma?? Have you now had the referral on this?

Sero-negative RA can be difficult to treat not least because of the absence on Rheumatoid Factor and other inflammatory markers in the bloodwork. The condition doesn't always follow the usual "RA" pattern making it difficult to follow progress. I know, been there, done that, got the T-shirt!

Have you had triple DMARD therapy? Have you already had one/two of the anti-tnf therapies? Has Rituximab been suggested? This doesn't always work as well in sero-negative RA due to the lack of B-cells, the lymphocytes which the drug depletes, however it is sometimes tried with methotrexate. Tocilizumab is another new drug. Here's a link to the recently updated guidelines with regard to the use of Abatacept nice.org.uk/guidance/index.... if your appeal hasn't yet gone it may be worth including this information (providing you meet the criteria of course!).

I only know one person on Abatacept and she has literally had everything available. There is little more that you can do other than appeal but it would seem that there may be other options or possibly tests done that would clarify your position with regard to the RA status.

NRAS have a very useful and informative booklet entitled "Biologics, the story so far"; it might be worth phoning them for a copy if you don't already have one. They may also be able to advise on your appeal.

Hope this helps in some way,

Lyn x

[AMDP]

Thanks Lyn,

Firstly I have no intention to name and shame- my doctors have been wonderful. Yes there is a question mark about Scleroderma too but as my specialist says the treatment would be the same anyway.

Yes I have the NRAS booklet, yes I have tried several Anti-TNF and even Tocilizumab. I am sero-negative and so Abatacept seems to be my last chance really.

My appeals went along these lines............ I was diagnosed with Rheumatoid Arthritis 10th June 2009 (2 years to the day) and of course it has totally decimated my life. The disease has been aggressive and none of the treatments to date seem to have halted its activity. My left hand is already virtually useless, the fingers will not bend and the joints are inflamed and painfully stiff. My right hand is almost as bad now too. My toes hardly bend and the joints on my big toes are particularly affected so I often find walking excruciatingly painful and I am scarcely able to stand up long enough in my bare feet to take a shower.As an artist my hands are of course vital to me but all my other joints, my elbows, my knees, my hips, are all agonisingly stiff and painful too. From a vivacious, energetic artist and successful business woman I have been reduced to a virtual recluse with very little to look forward to except enforced early retirement and just watching my body deteriorate.

Yes Rituximab has been suggested but as you know it only has a 20% sucess rate and is far less likely to work if one is sero-negative.

I have not been able to find out the cost of Abatacept v the cost of Tocilizumab is it really that much more?

Ax

[Gina_K in reply to AMDP]

Hi A,

Just curious, I presume you have tried combination Dmards, like Mtx, plaquinil & Humira together- thats what I'm on? Just wondering? Maybe the question we should all be asking is why the F... these biologics ARE so damn expensive - is it the patent?

[Hidden in reply to Gina_K]

Apparently Rituximab is half the price of Anti Tnf . Not sure why though. I am on Rituximab now

fiona x

[AMDP]

PS Lyn, thanks for the link I discovered that Tocilizumab is actually more expensive than Abatacept which I could have added to my appeal if i hadn't already sent it off. hey ho. Ax

[Hidden]

Can you try humira?>.. my unnamed health aurthority!! has similar issues!! humira ok for sero negative!!

[AMDP in reply to Hidden]

Thanks Summer, I have already tried Humira

[Hidden]

Hi

Well I think we are all individual and our treatment choices have to be individual.

I have not followed the set NICE pathway and as lyn has said to me on other bloggs- the recommended pathway is just that not fact.

Based on my experience I now believe that on this blogg we can never fully understand the individual clinical situation of each person. But Will always rethink in th elight of different evidence.

I would have been prepared indeed wanted to take the Anti TNF enbrel but found out yesterday that this is inadvisable due to my antibody profile and other variables.I was told by my consultant taking a Anti TNF would probably tip me into Lupus. ( my consultants view)

I have been in a similar place to you. In that after i had to dump methotrexate due to blood problems I rang up my Consultant saying that " RA was destroying my life" I love my work and dont want RA to define me.

I could not be seen due to NHS backlog on emergency appointments so I borrowed money and saw him privately.O will beg steel and borrow every time rather than be a victim to local priorites and limited resources. That said its not fair that money gets you out of a hole and people who cant afford stay in the hole suffering.

I went from steroids to Rituximab too ! I am scared but feel I have made this decision pretty much with fully informed consent. I was surprised that I didnt have to sign a consent form tho.

I downloaded full clinical data about Rituximab from Roche. My eyes are wide open. Including the data for fatalities from this drug and the fact that it states its not suitable for people who havent had Anti tnf first due to potential risk of PML and malignancy in the long term being unquantified. I am fully expecting to have frequent mild infections. Maybe i will be lucky and it will suit me. Thats the gamble. I know someone who is symptom free for 11 months before having another cycle and then again I know peoploe who have been hospitalised for mild to moderate infections.

Despite the sequence of drugs rec by NICE not everyone is suitable for the sequence. I have been told risks outweigh benefits of Ant tnf inj my case. The NICE protocol also doesnt describe the sort of contraindications as to why that make be the case for individuals.

I do think we have to get challenge NICE guidelines in individual cases.

I have members of in the Day center I manage who do this re Ant dementia meds and also involve the local councillor if necessary and it is a very positive thing to do.

Good luck to you. We are all individual with individual wants, needs and wishes about how we hope to live our lives. Some people are prepared to take risks that others wouldnt because for example they have different prioritities about what makes life worth living.

I hope that it gets better for you and best of luck with your appeal. It would be good to get some anecdotal evidence about how these things go.

Best

Fiona x

[AMDP in reply to Hidden]

Thanks Fiona, you paint a ver vivid picture. Ax

[Hidden]

ps I am on mono therapy for Rituximab. Again deviating from norm of ascombined with methotrexate but indicated in my case. x

[Hidden]

monotherapy is ok trust me! side effects issues with methotrexate its ok and wonderful for most people!

there are the very select few who unfortunately

have genuine health issues with methotrexate...and therefore mono-therapy is the way forward.. nras have a great publication on biologics xx

[Hidden]

Hi, I agree with Fiona we are all individual to our needs of the drugs available to us. Your right to appeal if you don't feel you have been treated fairly so I wish you good luck with that.

I think we have to put a lot of faith in our consultants in giving us the right treatment to suit our disease path, although we all have RA it seems that we are all different not just in our symptoms but in our treatments too.

Good luck and please keep us informed as to how you get on.

Mandy xx

[AMDP in reply to Hidden]

Thanks Mandy, I agree, in fact it was my consultant who advised me to appeal. Ax

[Hidden in reply to AMDP]

It just goes to show then that even the consultants don't always agree with the NICE guidelines.

If more people complain or appeal the more (hopefully )will be done.

Mandy xx

[josie]

Sorry to hear your problem with getting Abatacept I've been on it now for over four years and its been fantastic unfortunately its starting to stop working rally worried about the next drug tried every thing else nothing worked.

[cathie]

This is terrible, and as an aspiring artist myself, I feel terrible for you. I dont know how they can measure the costs of these drugs - it must be cheaper to put people back on their feet, surely. One of the nurses at my old hospital in Oxford was writing a study about precisely this, for her BA. How many of us are carers, living independently etc who might not be if treatment were not available. I hope things can improve for you.

[Hidden]

as above cathie// living and paying bills independtly just. if i can carry on working.. wouls like to get my hands on some enbrel. humira. or cimza etc myself!! funding issues!!

[Hidden]

Hi A,

I really hope you fight this and get to appeal! I realise that biologic drugs are expensive however I am sure your consultant wont have prescribed Abatacept if there was other cheaper methods he hadnt already tried.

If your consultant wanted to give you the drug then you should appeal! After all I am sure the specialists know best and not the trusts who dish the money out for these drugs!

Take care hun! I hope you get the medication your health deserves xx