NICE: Teprotumumab for treating thyroid eye disease ID 6432 - being scoped

[helvella]

I have just noticed a new NICE guideline has been started. Only a skeleton at present - in the guideline scoping state. It will probably be years before it is completed. It is good that it has been selected for further work but must be devastating for anyone suffering TED to see how far away this (potential) treatment might be.

Teprotumumab is not licensed in the UK.

This is the public documentation for the product from the USA:

dailymed.nlm.nih.gov/dailym...

Home > NICE Guidance > Conditions and diseases > Diabetes and other endocrinal, nutritional and metabolic conditions > Thyroid disorders

Teprotumumab for treating thyroid eye disease ID 6432

Awaiting development [GID-TA11531] Expected publication date: TBC

Status Awaiting development

Technology type Medicine

Decision Selected

Reason for decision Anticipate the topic will be of importance to patients, carers, professionals, commissioners and the health of the public to ensure clinical benefit is realised, inequalities in use addressed, and help them make the best use of NHS resources

Process STA Standard

ID number 6432

Project Team

Project lead [e-mail]

Email enquiries

If you have any queries please email [e-mail]

Timeline

Key events during the development of the guidance:

Date Update

10 April 2024 Awaiting development. Status change linked to Topic Selection Decision being set to Selected

nice.org.uk/guidance/awaiti...

[Buddy195 Administrator]

it is shocking Helvella that treatment is ‘out there’ but not accessible in the UK. As a TED sufferer myself, I fully support the actions of the TED Charitable Trust to campaign for this drug to be available to those who need it in a much shorter time frame.

[helvella Administrator in reply to Buddy195]

Are any trials happening in the UK?

I'd like to think that the NICE assessment would be based on UK evidence (as well as from wherever else it is in use).

Indeed, is it possible for anyone to get it under any private treatment?

[Buddy195 Administrator in reply to helvella]

It is not currently possible to access the drug in the UK, even privately.

According to the TEDct newsletter, there is an opportunity for those newly diagnosed with TED to apply for consideration for a future trial, but it is unclear when the trial will occur/ how many participants will be invited.

I recommend anyone wanting to know more about TED to join TEDct, as it is free to join & they have free online newsletters, information packs, regular webinars, plus Facebook & telephone support.

tedct.org.uk/

[BiscuitBaby]

That's strange you should post that today. I visit people in the community and they very often have autoimmune conditions and health issues. I'm increasingly seeing people being prescribed biologic treatments for rheumatology, asthma and giant cell arteritis. I keep wondering if one day there were be a biologic treatment for autoimmune thyroiditis. I don't know a huge amount about these treatments but it sounds lovely to think that a weekly injection might work better than daily tablets! If only the thyroid was a sexy enough condition for medics and science to investigate!!

[pennyannie]

Wanderingweasle

Just read about this recently - maybe there is more happening your side of the pond ?

[Wanderingweasle in reply to pennyannie]

Oh, I have talked to many people who did tapezza treatment already and met one as well. This is available in many countries now.

Even better, immunovant is reporting great results for Ted and graves itself as well and is in phase 3 for Ted and phase 2 for graves. I wonder why some countries have inefficient and slow regulatory processes.

[pennyannie in reply to Wanderingweasle]

What a leading question - we must not get political so shall leave this football to kick around !!