Am I likely to get funding for infliximab?

[Tobygosden]

I started to get ill in January this year with a persistent cough and lack of breath. After 4 months of visiting the doctor I was finally referred to the hospital as I could hardly walk up the stairs without getting out of breath, I had lost 2 stone and was told by my GP that I probably had cancer.

I was in hospital for 2 1/2 weeks whilst I underwent numerous tests but was cleared of any cancer, but was told that I had Behçet's disease which was causing blood clots in my lungs, a pulmonary anurism and vasculitis in my lungs.

I was started off on warfarin, high doses of prednisolone and a 4 month treatment of chemo (cyclophosphamide) which unfortunately hasn't worked as my lung function is still really low.

I am now on azathioprine and have been for 2 months but just been told that this isn't working either as I'm still developing phlebitis and my lung function is getting worse.

My consultants (rheumatology and respiratory) have suggested that the last resort would be infliximab but due to changes in procedure my PCT are not authorised to issue me the drug as it costs £10,000 a year, but instead they have to apply to the Behcets centre of excellence in London for funding etc. Has anyone else been in this situation and what is the likelihood of me being allowed this drug?

[andreafm]

Hi there

Sorry I don't really have any info to help you except I think the Centre of Excellence will probably have more sway and perhaps a direct license to prescribe infliximab. It sounds serious enough to me to get it.

It sounds as if you consultants are looking after you well and not willing to just give in at the first hurdle. I know what it is like to not be able to breathe properly and I can say, for me it probably is one of the worst symptoms I have got.

I have been through 3 different immune suppressants [Azathioprine, Cellcept and Methotrexate] and either they didn't work well enough or presented side affect problems. I am still undergoing tests for the problem and off Immune Suppressants altogether [except prednisolone] whilst this goes on.

I do wish you luck with this and hope you will begin to recover soon.

Andrea

[devonshiredumpling]

Toby, you could ask your doctors to refer you to the nearest Centre of Excellence. There are three: London, Birmingham, Liverpool and you can be referred to receive all treatment there or for just a one-off appointment for when your local team of medics get out of their depth.

BD sufferers DO get scripts for infliximab,so I see no reason why you shouldn't. Bear in mind though that as it is incredibly expensive they won't be giving it away willy-nilly - you'll have to jump through a few hoops.

My belief (hope?) was that the Centres of Excellence would be a useful addition to the Behcets team, bringing excellence of treatment and advanced knowledge to a wider audience.

Love

Di

[Carlyanne in reply to devonshiredumpling]

Hi Toby ,

I just got approved for the anti TNF drug I have got Humira I was going to have Infimab , my consultant went through the centre of Excellence the hospitals pharmacy budget for it , but I still got to stick with my consultant , he has been interacting with the consultants from St Barts. It has taken around about 6 months. It lt took a lot if work but they def can cater for you . The best thing to do is get your consultant to email a letter the head consultant at St Barts .

Hope this helps

Carly

[SuenMike]

Hello Toby,

I had to wait three years until my consultant eventually beat my PCT to allow me to have Infliximab. Now the centres of excellence have been founded, your consultant should be able to liase with them about acquiring a TNF drug for you.

Good luck xx

[willoughbybrown]

I was given Infliximab 2 years ago. I was told that it was easier to justify the cost to a panel when the patient was sitting in an NHS bed, as opposed to being an outpatient.

Andrew

[snugglebum]

I too was given infliximab aprox 2 years ago, I had two consultants that fought for it for me. It has been the best treatment so i have had, good luck ..

[Tobygosden]

Hi,

Thank you all for your comments regarding the funding. I know my consultants have spoke to the specialists at the centre of excellence in London and forwarded them my medical notes in the hope they will fund the infliximab from their budget. I found the below info regarding the funding for behcets sufferers which has taken away the ability of the PCT to fund the treatments:

RE: CHANGES TO THE PORTFOLIO OF NATIONALLY COMMISSIONED SERVICES FROM APRIL 2012

This letter gives information about changes to the portfolio of nationally commissioned specialised services that are commissioned by the National Specialised Commissioning Team (NSCT) from 2012/13.

The following eight services, which were formerly commissioned by PCTs, have been designated by Ministers and will be commissioned on a national basis from April 2012: •Alkaptonuria service

•Beckwith Wiedemann syndrome with macroglossia service

•Ex-vivo partial nephrectomy service

•Primary ciliary dyskinesia management service

•Severe acute porphyria service

•Breast radiotherapy injury rehabilitation service

•Behc¸et’s syndrome service

•Adult ataxia telangiectasia service

These changes have been recommended to Ministers by the Advisory Group for National Specialised Services (AGNSS), which was established in the summer of 2010 following the consultation Strengthening national commissioning. AGNSS provides advice to Ministers on those services that should be nationally commissioned and which centres should be designated to provide them.

For these eight services, AGNSS took into consideration the savings that would accrue as a result of introducing a national commissioning model. Details of how these savings will be realised are given in Appendix A. In total, it is estimated that £4.975m of savings will accrue to the NHS as a whole on a recurrent basis each year, from year three of the service being in operation.

I've got my fingers crossed that they'll agree I'm in need of the drug.

Toby