RoActemra

[Niblick]

Does anyone know when the Patent for RoActemra (Tocilizumab) expires. The NHS will currently only pay for one year of injections. Current private costs is approx £250 per syringe. Once expired the price will go down

[DorsetLady PMRGCAuk volunteer]

From what I can see, it expired in September 2023... and although in US, the FDA has 'given the nod' to a biosimilar - that doesnt seem to have happened in UK.

This link does mention it in regard to JIA -Juvenile Idiopathic Arthritis, not sure what the situation is in UK re GCA- or anything else for that matter-

arthritis.org/news/news-and...

Europe - does mention GCA-

pharmaphorum.com/news/eu-ha...

FDA -

pharmaceutical-technology.c...

[PMRCanada in reply to DorsetLady]

Is the biosimilar in the USA called Kevzara? I’ve heard of it for PMR patients in the US.

[DorsetLady PMRGCAuk volunteer in reply to PMRCanada]

No… Kevzara is also known as Sarilumab and is a type of drug called a biological therapy… so same as RoAcemtra.

The biosimilar in US is marketed as Tofidence, in Europe as Tyenne according to links in my reply above…

[PMRpro Ambassador in reply to PMRCanada]

And there is a legal spat going on between Roche (Actemra) and Biogen (Tofidence) because Roche feels their toes were trodden on during the development process. Don't hold your breath ...

[piglette]

What drug companies sometimes do is adjust the product slightly so they can have a new patent.

[PMRpro Ambassador]

It has expired. But it doesn't always mean the price goes down - it depends on the competition. Humira, for example, is up against 4 or 5 other drugs in the same group, and there are now also what are called biosimilars, similar to Humira itself, which can be developed once the patent is gone. And its price has plummeted. But as far as I know, none to compete against Actemra and there are only a very few other IL-6 inhibitors on the market. If you need an IL-6 inhibitor - not so much choice as yet.

[Niblick]

I understand that during the Pandemic, NICE allowed Rheumatologists to prescribe a second year of Tocilizumab injections, if required, but then restricted to one year. The Rheumatologists have been "petitioning" NICE for permission to prescribe a second year on the NHS. Has anyone been advised to have a second year of injections but the NHS wont pay?

[DorsetLady PMRGCAuk volunteer in reply to Niblick]

You are correct, during Covid there was an extension re TCZ… but soon return to normal rules.

There are very few members in the UK who have successfully extended the period - but I think one is Sharitone - as I’ve tagged her hopefully she will respond…

Rugger was one of those who had an extension during Covid, but is now on MTX, however she may have more info.

[Rugger in reply to DorsetLady]

Yes, DL, I was 'fortunate' to have 2 years' TCZ during 2020 - 2022, which enabled me to reach zero pred. My Rheumatologist then started me on MTX, as she didn't want me to be on no medication at all. However, after 8 months of MTX the inflammation resurfaced, so MTX was stopped and for the last year I've been back on pred alone. (Current dose 2.5 / 2mg)

I'm seeing my Rheumatologist in 6 days, so will ask her what the situation is with TCZ.

[Niblick in reply to Rugger]

HI Rugger. Did you get anymore info from your Rheumatologist ? Another responder thought you may have written to the Health Minister? I have just written to my MP to see if they can help. I am now paying £1030 per month for a box of 4 syringes , prescribed by my NHS Rheumatolgist and dispensed by an NHS Pharmacy

[Rugger in reply to Niblick]

Hi Niblick, I saw my Rheumatologist yesterday and all she can hope is that NICE will make its decision on TCZ for GCA "soon". She said it had been due to review the issue in 2021.....! I did write to Steve Barclay in April 2023 when he was Health Minister, but didn't even receive an acknowledgement of my letter from a minion! He's now left that post for Environment, Food and Rural Affairs!

In the meantime, she's increased my pred dose to deal with what we fear is a relapse of my condition. ☹️

I thought that 4 pre-filled pens cost £913! (Maybe 'syringes' are more expensive?)

All the best.

[Sharitone]

I have had TCZ for just over 2 years, with 'therapeutic' gaps. However, it's not because it was extended, I'm afraid, but because of the diagnosis that is entered on the application (by the rheumatologist). If (s)he says it is Takayasu's Arteritis, then you get it indefinitely, as far as I understand. It is obviously a ridiculous position, particularly as people who have had their year generally seem to flare up again afterwards so are back on moderate doses of the steroid that they were supposed to be spared from. Rugger was one of these and she wrote a very good letter to the minister of health, I think, but didn't even get a reply.

I cannot work out how to tag someone else!

[PMRpro Ambassador in reply to Sharitone]

"I cannot work out how to tag someone else!"

Type @ and then the name of the person you want to tag - and a list of possible names should come up. Click on the correct name and their name will be entered. When you click Reply for the comment, the @ disappears and the name appears in blue in the reply.

[Sharitone in reply to PMRpro]

Thanks!