Cost of tocilizumab

[Duncoding]

My NHS entitlement to TCZ will expire soon. Has anyone tried to 'go private' and pay for it?

[DorsetLady PMRGCAuk volunteer]

Think question has been asked before -but not sure anyone has actually gone down that route.

Not sure it’s as simple as getting some drugs -Actemra has only been authorised for one year for patients with GCA - so a Rheumy who has a foot in both the NHS and a private practice might risk repercussions should they prescribe privately.

Don’t know if that’s the case - always worth asking the question though.

The NHS listed cost is around £910 per shot for RoActemra 162mg/0.9ml solution for injection pre-filled pens..

[Duncoding in reply to DorsetLady]

Ah, that price is for a box of 4 pens, so the cost of weekly jabs is just over £12k p.a. but as I’ve lengthened the gap to 14 days the cost would be half that. Another complicating factor is the cost of refrigerated delivery….

[PMRpro Ambassador in reply to Duncoding]

If the company will supply it, they may well just add you to their "mailing list". Why not contact them? They do special programmes in the US, you would think that they might be helpful if someone wants to pay out of pocket.

As to whether a private rheumy might prescribe as they do anything else, why not contact Rod Hughes secretary and ask the question?

[Duncoding in reply to PMRpro]

Good ideas! Can you give me an email for RH’s sec, pls? I’m not sure who you mean by ‘company’ – Sciensus (delivery) or Roche (UK distributor)?

[PMRpro Ambassador in reply to Duncoding]

Jody's email at Runnymede is here

gooddoctor.com/doctor.php?i...

[Duncoding in reply to PMRpro]

Oh dear, that email address for Jody was rejected.

I’ve emailed Roche.

[PMRpro Ambassador in reply to Duncoding]

The only other is for rodhughes - I gave it the other day but this happens all the time and I can never remember! And the contact details changed ...

This gives a phone no at Runnymede

finder.bupa.co.uk/Consultan...

[Bridge31 in reply to PMRpro]

Jody’s email is

[e-mail]

[PMRpro Ambassador in reply to Bridge31]

Ta - I shall try to remember that!!!!!!

[Bridge31 in reply to Duncoding]

Having seen Dr.Hughes recently ….Jody’s email is

[e-mail]

[DorsetLady PMRGCAuk volunteer in reply to Duncoding]

Yes £12k annual is price usually quoted….sorry if I misread… but still a lot of dosh…have sent you a Chat…

[Duncoding]

thank you so much for all the suggestions. i am making phone calls and sending emails, and will post the results......

[WaltzG]

I tried to get actemra thru private health insurance but they don't do it. Was referred back to NHS for it. I too am coming to end of the permitted year ...

[Rugger]

Have a look at LemonZest11 - her posts and replies document her purchase of TCZ direct from Roche (at a discount!) in Australia. She had to go via her Rhematologist, but she did all the leg work. Good luck.

[Duncoding]

response from Prof Hughes' secretary : I have spoken with Professor and there is no facility to prescribe biologics including tocilizimab privately - sorry.

[DorsetLady PMRGCAuk volunteer in reply to Duncoding]

Well at least you know now..pity..😞

[PMRpro Ambassador in reply to DorsetLady]

That was the best hope I had. I suppose the next possibility would be Roche but maybe the politics would preclude any hope of getting the NHS to use tocilizumab properly - it is abundantly clear from ongoing studies that 1 year is a totally inadequate duration of treatment.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

It’s absolutely bonkers… but as well know - if you don’t ask the correct question in the beginning you invariably get the wrong answer at the end… 🤨

[Duncoding]

Hmm. I’ve been reading about how Lemonzest11 (thanks Rugger) managed to get TCZ direct from Roche in Australia, with a referral from her Rheumy, so maybe that’s the way to do it. I emailed Roche UK last week….

[PMRpro Ambassador in reply to Duncoding]

Good luck ...

[DorsetLady PMRGCAuk volunteer in reply to Duncoding]

Fingers crossed they can/will help.

[Rugger in reply to Duncoding]

Let us know the outcome! Good luck.

[LemonZest11]

Hello Duncoding, sorry for late reply, I have only just stumbled on your thread. After approaching both State and Federal Health Ministers here in Australia, our Fed Health Minister suggested that I go directly to Roche and tell my story. I did that in a grovelling letter, explaining my trepidation about Methotrexate et al, and telling them that TCZ was working well for me. They got back to me explaining that they are unable to deal directly with patients, asking me to get my Rheumatologist to contact them at an address they gave me. She was reluctant, saying it was against usual protocols but I implored her and she did. I now have access to TCZ indefinitely via renewable prescription with 4 repeats each time. I pay for the first 2 boxes and they provide the subsequent 3 repeats free. The first two are AU$850 each (4 pen boxes). I need Rheumatologist support for renewal and she's a bit tricky but so far so good. I have managed to space my jabs to 4 weekly and while the fourth week has me feeling a bit fragile and tired, I am managing well. I see my Rheumy in 3 weeks so we'll see what she thinks then. I have been off pred for 40 weeks now and counting! If you need any more information, don't hesitate to ask. Go for it, it's your body, you know best!

[Duncoding in reply to LemonZest11]

Hi, thank you so much for picking this up. I was about to PM you!

I’m fortunate in having a supportive Rheumy but the NICE rules are similar to those in Oz from the sound of it. I’ve stretched the gap to 14 days and am doing well and am desperate to continue because I’ve had every steroid side effect in the book and simply cannot face going back on them in the event of a flare after my 52-week supply of TCZ runs out.

My question to you is: to which department at Roche should I send my (grovelling) letter? I emailed [e-mail] last week, but no reply so far. And time is running out.

Thank you!

[PMRpro Ambassador in reply to Duncoding]

Bear in mind - you get 52 only for weekly so store them up in advance even if you are using them biweekly.

[Duncoding in reply to PMRpro]

oh yes, deliveries stopped months ago, and the stockpile in my fridge is strict date order!

[PMRpro Ambassador in reply to Duncoding]

Excellent!!!

[LemonZest11 in reply to Duncoding]

As PMRpro says, if you are using TCZ fortnightly, you should be stockpiling them and that will give you extra time. I went on the Roche Australian website and found an address there that was for their Australian Corporate Affairs @Roche email. When I received my response, the following day, it was from The Medicines Access Coordinator, to whom it had been forwarded. You need to contact Roche in the UK, so perhaps try this: [e-mail], or

[e-mail]

But for me, it was the initial email address on the website. Or ring them and get an email address for The Medicines Access Coordinator. Let me know how you get on.