NICE u turn after Roche drug price negotiations

[Spike27]

Excellent news re: Gazyvaro!!

m.bbc.co.uk/news/uk-wales-3...

NICE press release added by admin

nice.org.uk/news/press-and-...

[HAIRBEAR_UK Founder Admin]

Yes this is Excellent news

will have to get up early to beat you to a post Spike

Good to see that BBC Wales are on the ball !

The NICE ACD preliminary Guidance and committee papers are due to be published on their website today.

More will follow soon

[PaulaS Volunteer]

Great news!!! Thank you Cardiff for all the trials done on this!!

Now we'd like to know WHEN it will actually be available to patients, and to which groups... (Previous posts suggest just for first line treatment in combination with Chlorambucil).

[HAIRBEAR_UK Founder Admin in reply to PaulaS]

Hi Paula the final guidance is due to be published in February

"This is preliminary guidance; NICE has not yet issued final guidance to the NHS. Until then, NHS bodies should make decisions locally on the funding of specific treatments."

[speckly in reply to HAIRBEAR_UK]

We need to hope it is not a postcode lottery. But it is good there is a move towards previously untreated cll

[HAIRBEAR_UK Founder Admin]

NICE press release

nice.org.uk/news/press-and-...

Snip

"About the draft guidance

Obinutuzumab, in combination with chlorambucil, is recommended as an option for adults with untreated chronic lymphocytic leukaemia who have comorbidities that make full-dose fludarabine-based therapy unsuitable for them, only if:

bendamustine-based therapy is not suitable and

the company provides obinutuzumab with the discount agreed in the patient access scheme."

[PaulaS Volunteer in reply to HAIRBEAR_UK]

Thanks NIck. That does rather narrow the field for Obinutuzumab - though it's still great news of course.

As someone needing treatment soon, I'm very much on the lookout for any new options (as are many folk here, I suspect). I don't think I'll be able to add this one to my list, but it could be just what some people need.

[Cllcanada Top Poster CURE Hero]

Great News! I hope we get a similar recommendation in Canada. The comparison in PFS in older patients between Gazyvaro and chlorambucil and Rituxan/chlorambucil and chlorambucil alone is very pronounced...

Here is the trial the decision was based on in part...

healthunlocked.com/cllsuppo...

nejm.org/doi/full/10.1056/N...

[pitbull]

Great news indeed and well done the Cardiff team for their work. I do however find the BBC report a little confusing. The BBC report facts section states:

"Chronic lymphocytic leukaemia (CLL) is the most common type of adult leukaemia in the western world"

Yet we are told it is rare, does this imply that Leukaemia in general is a rare form of cancer and CLL is the most common?

This confusuion hase plagued me since diagnosis. Even my Haematologist states it is rare.

Over to Nick, Neil or our Canada rep to demystify this conundrum

Kirk

[MaudMarie]

Within Europe CLL is classed as an orphan disease, less than 5 cases per 10,000 population, the figure for CLL is less than 3.5 patients in 10,000 people. This is based on EUROSTAT 2013 - estimated 178,000 patients in a 509,000,000 population.

Rare does not mean RARER - see EMA website.

[AussieNeil Partner Administrator]

Here's the Leicester Mercury's report on the welcome U turn:

leicestermercury.co.uk/Bloo...

In answer to Kirk and further to MaudeMarie's response, blood cancers are rare compared to solid tumours, so CLL just happens to be a common cancer in a rare form of cancer if that makes sense.

What I find interesting is that prior to my CLL diagnosis, I was only reasonably aware of acute, mainly childhood leukaemias.

Neil

[MaudMarie]

Neil, I think that CLL was classed as a Non-Hodgkin Lymphoma for a long time and wasn't talked about as a leukaemia. I don't recall when the classification changed but it maybe on Hamblin's blog.

[Psmithuk in reply to MaudMarie]

I'm puzzled by 'Non-Hodgkin's' and 'Hodgkin's' -can anyone explain whether we have one or other of these if we have CLL?

[MaudMarie in reply to Psmithuk]

Hi chrisgranny. Sorry to have puzzled you, didn't mean to set hares running. If you look at the website for The Lymphoma Association at lymphomas.org.uk you will see under Types of Lymphomas, Low-Grade Non-Hodgkin Lymphomas, that CLL/SLL is listed there.

If you want to look at this further then you have to go down to cell level and start to look at the CDs on the cell surface to start to distinguish between them, and of course symptomatically they are different.

Best regards

[AussieNeil Partner Administrator in reply to MaudMarie]

MaudeMarie, I've made the point before on this site that CLL is pretty unique in being both a leukaemia and a lymphoma. It is the most common and as you state, one of the many Non Hodgkin Lymphomas. Terry Hamblin has blogged about this unusual situation and tried to explain away the confusion on forums. CLL to my understanding has always been a leukaemia per the name "Chronic Lymphocytic Leukaemia". The confusion comes in when you include SLL "Small Lymphocytic Lymphoma", which is classified as the same disease, caused by the same form of cancerous B-Cell lymphocyte as CLL. Chris's post below explains it well:

healthunlocked.com/cllsuppo......

Neil

[Psmithuk]

Thanks!

[pitbull]

Thanks for the replies guys, been working away so only just got to see them.

I think I get it now, Leukaemias being relatively rare amongst the cancers gives it an overall rarity and as CLL seems to be diagnosed more frequently it by default is the commoner amongst the Leukaemias!!

I have to say I agree with Neil, until diagnosis Leukaemia was mostly associated with childhood and we have all seen the campaigns for bone marrow transplants etc for an unfortunate youngster, it is only now by research and talk that we realise how it affects us in later life.

Take care all

Kirk