CLL Support Association
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Did anyone see this

Hi all

I might be a little behind the times on this.

In 2013 Andy and I cycled London to Paris raising funds for Luekaemia and Lymphoma research as we both have Cll.

We raIse money to fund research into luekaemia and Lymphoma. New drugs appears that can benefit people and NICE are not very nice and do not approve it.

So what do we do about it ?

Me and Andy have had a chat and figure we should make some kind of protest, We have posted on the LLR website looking for ideas but mine are along these lines I would appreciate input into this.

We are thinking along the lines of organising a protest Cycle ride meeting at a pre arranged point and Cycling through London around Trafalgar Square down Whitehall past our masters residence on to the offices at NICE handing in a petition

When we arrange this can we count on our brother's and sister's from this site.

All I know is if we do nothing, nothing will change.


9 Replies

I did see the article in the Daily Mail.

The summary would be :-

‘A new leukaemia drug, which has been hailed for offering hope to many patients who previously had nowhere left to turn, should not be used widely in the NHS, health officials have provisionally said.

The National Institute for Health and Care Excellence (NICE) said that obinutuzumab (Gazyvaro) should not be made widely available to treat chronic lymphocytic leukaemia (CLL).

In new draft guidance, NICE said that “uncertainties” over manufacturer Roche’s data means it it unable to recommend the drug.

Earlier this year, charity Leukaemia and Lymphoma Research said obinutuzumab could give patients “effective, life-prolonging treatment”.

The drug appears to be “more effective” than another monoclonal antibody – a medication which harnesses the body’s own immune system to target cancer cells – which is currently used alongside chemotherapy to treat CLL, the blood cancer charity said.’

The news was also on the following pages:-

Chris at made the following comments :-

Yes... I saw that... not good... Roche will lower the costs and resubmit... the sticking point is that there is no proof that this treatment extends overall survival...

Here is the guidance... first one on the top left column dated Oct 3rd

Thus while NICE has rejected the application there does seem to be doubts as to the drugs usefulness and the costs are very high.

It would seem that the drug is a work in progress at present and perhaps more trial results are needed and a better price.?

However if you are considering a protest have you considered this organisation :-



I think cost is going to be a driver on what treatments are available. Here is some dialogue from a mail I received this morning:

Did you know a new cancer drug is available for people suffering from late-stage breast cancer -- but the pharmaceutical company is charging £90,000 for it? The drug is so expensive the NHS can't work with the company to provide it to patients in the UK. Margaret Connolly, a survivor whose niece died of late-diagnosed breast cancer, is asking Roche Pharmaceuticals to lower the cost of the drug.

I personally am reluctant to sign on line petitions that cover more than one petition, as one I did sign resulted in numerous emails. I would consider signing one on the LLR site.



More on the costs for drugs at this Patient Power link.



Thanks Dick,

Scary blog, but how do we meet the costs incurred in developing these drugs. Drug companies as far as I am aware do not share with us how much developing new drugs actually costs them. They do not share information with each other, which could possibly reduce costs as we have discussed here previously.

I think there was a move to make researchers share information on what is working and what is not, wonder did that get anywhere. Each company wants to bring their drug to the market for gain, a case of profit before people. Although I understand that there has to be profit, I wonder how many cases of people paying this high cost for the drug, would it take for the companies to break even and benefit over development costs.



The costs for a drug being developed are never known, it all becomes a rather murky world of questionable accounting. Thus we are unlikely to ever know the true costs for the development of a specific drug.

However it is well known that there are questionable practices in the industry and the Swiss government complained and passed a law limiting directors bonuses when one retiring director was awarded a 46 million thank you..!!

The paragraphs below are from this morning...

'But the product's cost will be the next major question. Its manufacturer is Gilead Sciences, which also sells Sovaldi at the very controversial price of approximately $1,000 per daily dose, totalling $84,000 for the standard 12-week treatment course.

Gilead has indicated that the new combination pill will sell for $1,125 per pill, or $94,500 for a full course of treatment, which is likely to intensify pressure on the company and to provide new ammunition to those who say that drug prices in general are too high.

A spokesman for one of those critics, America's Health Insurance Plans (AHIP), a trade group for health insurers, blasted the Harvoni pricing.

"Gilead had an opportunity to demonstrate that it wants to be part of the affordability solution, but the company still seems to believe it has a blank check," said AHIP's Brendan Buck in a statement.

"Our health care system has long relied upon a careful balance between affordability and rewarding innovation, and this pricing topples it. Pricing like this drives up premiums for everyone, decimates public programs, threatens jobs, and most importantly, puts promising treatments -- like this one -- out of reach for many in our society."'



Thanks for that Dick

Yes, definitely scary for anyone needing access to new drugs, no wonder Andy and Julian feel so strongly about it.



Here is the link to the draft guidance... it clearly shows how decisions are reached and what role QALY play...

Gazyvaro (obinutuzimab) based on U.S. pundits figures is about 1/3 more than rituxan and chlorambucil is extremely cheap...

This combo treatment is relatively inexpensive compared to ibrutinib at around $98,000 U.S a year and idelalisib plus rituxan at $120,000 U.S.

Add to the mix the recently EU approved subcutaneous Rituxan... 5 minute injection in a doctors office, compared to 4-5 hour IV infusion...and NICE is going to have its work cut out for it... will the costs saved in staff and pharmacy time, offset the additional expense of Rituxan SC??? I hope so...

Stay tuned...


PS the Scottish Medicines are also looking at Gazyva (obinutuzimab)/chlorambucil it will be interesting to see their decision...

In Canada we also have ofatumumab/chlorambucil going through funding review as well as Imbruvica (ibrutinib) and obinutuzimab/chlorambucil ... an embarrassment of many will make the cut! Bendamustine/rituxan BR just pulled out waiting for new data from ASH...


Well, if your treatments all come from a national health system which is only alloted X dollars/pounds/euros to spend then the question becomes which is more cost effective. Obinutuzimab is essentially a Gen-2 Rituxan and used in the same applications. The kinase inhibitors like ibrutinib and idelaslisib are much more effective than monoclonals plus chemo so you have to ask where is the best place to spend your limited funds.

Question - with UK & European national health systems can you privately buy drugs even if the NH won't supply them? Decades ago I became ill while in the UK and, not being in their national health, headed to the cluster of still existing private physicians on Harly (?) Street in London for treatment. Paid cash for both their services and prescriptions. Can you still do that?

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It's good to know that active patients are willing to challenge decision making but before you jump on your bikes there is another phase to complete before the NICE guidance is final.

NICE invite comments on their recently published draft guidance from members of the public, consultees and commentators by 5pm 23 October 2014. The documents are available on the NICE website - see Single Technology Appraisal (STA) for Obinutuzumab ID650-ACD Committee Papers.

Several patients and the UK CLLSA have already been involved in the appraisal process to date and will be commenting further. Perhaps you could also comment, but put time aside as the documentation is 46 pages long.

I am as anxious as anyone to see effective new drugs available to the CLL patient community, however the drug company must produce sufficient safety data from the trials as well as performance data and reasonable pricing - and the clinicians must be credible in their support for these drugs. NICE is not always the bad boy. They are there for many reasons not just to evaluate cost effectiveness but also to consider patient safety.

We need to hold our fire as patient advocates until the right moment comes and then use all our resources and patient goodwill to make our case as loudly as possible.

All the best to everyone following this thread.


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