CLL Support Association
9,604 members15,073 posts

NHS decision takes away Ibrutinib from patients

NHS decision takes away Ibrutinib from patients

A disturbing article in today's Times newspaper says that the NHS has withdrawn Ibrutinib for some CLL patients. The patients affected are some 200 a year who have been in remission after chemotherapy for more than 3 years. The article, along with a case study from a journalist affected is at thetimes.co.uk/edition/news...

NICE, the agency which had approved the drug for CLL patients says the drug should be used where the doctor responsible thinks it is the right treatment. The NHS has put a hold on this.

60 Replies
oldestnewest

That’s deeply worrying!

Newdawn

3 likes
Reply

Worrying, frustrating, frightening, sad, scary, angry!

4 likes
Reply

The scary thing is I predicted this funding issue over 4 years ago and got into a bit of a heated discussion with a member who told me I was being naive/defeatist and no Govt. would ever allow this to happen. I hope he proves to be right!

Newdawn

11 likes
Reply

It's probably quietly happening with other treatments.

Frustratingly the Commissioners are using the patient characteristics inclusion criteria from the trial that was evidenced as showing a benefit for patients as the restriction/qualification for Ibrutinib.

I'm going to write to my MP as this is the thin end of the wedge. What is the point of patient groups engaging with NICE if this happens afterwards.

3 likes
Reply

I think we need a general campaign mobilising through the various blood cancer charities and pressure groups Jackie because this is a matter of great significance.

All our MP’s should be contacted about this worrying development.

Newdawn

7 likes
Reply

Can HU give us a dislike button? We don't want to see any potentially useful options taken away. Probably the bean-counters are in the ascendancy at NHS at the moment putting cost before patient care.

3 likes
Reply

Thanks for posting this article which applies to the UK NHS patients.

This is very frustrating for those of us that worked hard to engage with NICE to get this treatment approved for relapsed CLL patients and feels like a betrayal of Trust by the NHS Commissioners who have issued this guidance.

Essentially, if you have had a good remission on chemo-immunotherapy of more than 3 years and are age <65 then you will be offered chemo again even though your remission is likely to only be about 1.5 to 2 years. I don't need to add all the other adverse effects likely to occur such as clonal evolution etc

We have a few members of this site who have been informed that they will have chemotherapy again, against the NICE guidance. It would be interesting to know how many from the UK there are.

Mick491 this is the information that I was referring to in our conversation.

This is the journalist's story that prompted the article (he also broke the sex abuse in Haiti by charity workers story)

thetimes.co.uk/article/sean...

Jackie

4 likes
Reply

This is so disturbing. The government should not deny effective medications from its people. I’m in the US so I don’t understand the UK’s system of government. But is there a way to write to members of parliament about the issue? Does parliament have the ability to correct this issue through legislation?

4 likes
Reply

You mention that chemo will be offered to those who have exceeded 3 years remission and are under 65 years of age, but I don't recall seeing the age restriction in the article. I'm interested because I have been in remission for 4 years following FCR but have just turned 68 and because of cardiac issues do not want to undergo chemo again.

We all know that the powers that be are frequently finding ways to save money. I guess it's often only when an issue affects us directly that we awaken from our slumber and want to be more proactive. Good to read the thoughts and advice of members here - and I will quiz my consultant at my next appointment.

1 like
Reply

You'll be fine at 68, the age restriction is specified in the guidance.

Reply

Thanks for your reassuring reply (though my cardiac issues and markers may still prevent me from having ibrutinib when I fall sick again).

I will continue to root for those younger than me who would benefit from this drug. Thankyou again..

1 like
Reply

How horrible to be forced to do something you know won't work for long and may harm you. In my mind, I always thought I'd never do chemo again.

2 likes
Reply

Couldn't agree more which is why I'm trying to see how many of our members have had this restriction imposed on their treatment.

Would be good to collate their stories as evidence.

5 likes
Reply

Thanks for doing this for them. Surely treatment has to be seen in the context of a whole pathway rather than just the step in front.

2 likes
Reply

Are you co-ordinating a response on this? I can take it up locally as I am a patient representative on the local Cancer Alliance and can contact my MP. But it would be better if CLLSA or someone more at the centre of things took a lead and let us know what we can be most effective with.

6 likes
Reply

I'm doing an informal thing at the moment so gauge the scale of the problem but to be honest just one patient denied Ibrutinib treatment because of this 'advice' is one too many.

Sometimes volume is important so please feel free to contact your MP and let us know what the response is.

We need to make a fuss.

8 likes
Reply

What about engaging the press to discuss this issue with you- letters to the editor section of reputable papers/ social media sources? This issue will probably affect other medications or treatments as well for other people

Sandy Beaches

Reply

CLLSA are writing to the Editor of the Times but there’s no guarantee that it will be published.

Reply

It was published. The times are behind their chief reporter! Any other patients affected should contact them (I am in direct contact with the journalist, though as a watch and wait this doesn't directly affect me yet)

Reply

Hi Adrian.

Any guidance on how to reach the reporter?

Just over three years ago, I underwent the recommended FCR chemo therapy. It nearly killed me, twice. Once during the initial administration of the chemo (I had to be resuscitated by nurses on an emergency basis) and once because my neutrophils were so low I had to be rushed to hospital in an ambulance, and stayed there for four days.

I am 58, my lymphocyte count just went above normal range and the lumps are coming back ... so I am in the firing line.

I've written to my MP and Lord Shaunessy who seems to be the most active peer on health issues.

Best regards

Reply

I’m over 65 so the hope is that I won’t have to have FCR again when I relapse. I am however very fit with no comordbities. So a chance.

If they are limiting Ibrutinib, I hope that they are investing and allowing for the yet newer drugs to be used.

I can see sense of FCR being used the second time if the patient is suited but hey, I’ve used FCR once, so give us a break. Nearly 2 years in remission in U.K.

3 likes
Reply

As always the awkward one, I'm b()ggered if I'd do it again.

5 likes
Reply

Not because it was that bad, just because it wouldn't last long.

6 likes
Reply

When taking FCR I always thought I’m taking this because it’s cheap and effective and next time they will give me something newer. So okay NHS.

Next time I want new non chemo! Are you listening NHS.

6 likes
Reply

Dear devonrr - jm954 kindly replied to me because I too am over 65 and completed 6 rounds of FCR 4 years ago. She reassured me that removing ibrutinib only applies to those under 65 but I think we should still promote the use of ibrutinib for those younger than us. Hope your remission continues for a long time yet. All the best.

2 likes
Reply

I read a post on this thread which detailed the proposed criteria. The FCR usuage would be considered for those under 70.

So all goalposts changed.

Have you signed the petition?

Hoping for a long remission for us all.

Reply

I would wonder if this action is actually legal?

Firstly doctors have a duty to offer the most suitable treatments that are available not only based on guidelines but because of the oath they confirm.

If a drug has been approved by NICE and guidelines set it means cost has already been taken into consideration during the drug approval.

For administration to arbitrarily decide certain patients will not be offered such a treatment even if it is the most suitable for that individual is surely incompatible with the objects of the NHS.

Also why does it only say 200 patients? Am I missing something?

I would suggest that HAIRBEAR_UK takes a look at the factual details and let’s us know if we need to write to Jeremy Hunt.

At the moment I’m concerned about the facts are a bit iffy.

Geoff

3 likes
Reply

The legality of it has been raised and is being examined more closely. The facts and 'advice' are quite detailed but too long winded to go into on this conversation.

HEARBEAR hasn't been involved in this issue but I promise it's being taken seriously and the CLLSA are looking at what avenues can be pursued.

We are all very concerned.

9 likes
Reply

Jackie I have just returned to the UK this evening. Sorry for not commenting sooner, the high prophile coverage over the weekend has certainly raised the game here.

There has been bewilderment and disbelieve by all stakeholders for some time. I hope the Blood Cancer Alliance as a group can lend some weight and resource to this too

It is all the more bewildering as NHS Wales are following guidance. There is a health equity issue here too . It is a shameful situation. But will it stand up to a legal challenge?

I will catch up on latest developments in the Morning. It is good to see that CLLSA are working behind the scenes with other stakeholders including the UK clinical CLL community on this. I can assure you all of us in different groups and roles take this very serioisly. and will look to lend support Having just come in the door I will catch up with Leukaemia Care and latest developments in the Morning.

Nick

2 likes
Reply

I really don't think this would stand up to legal challenge. Am in touch with the journalist direct and he is speaking about going for a judicial challenge. For this reason, and to also perhaps do a follow up article he is interested in being put in touch with other patients directly affected...

Reply

HI Adrian, As above - please let me know how I can get in touch with the journalist. Thanks!

Reply

I have his email. If you send me a mail at adrian.warnock@gmail.com I will forward it.

Reply

Many thanks Adrian I found it - the power of Google!!

Reply

Hi Cammie sorry for late reply, I have been working on this this morning with colleagues. Yes it is particularly confusing when NICE and NHSE publicly give clear statements on their website page about appraisal positive FAD outcomes, next steps and NHSE obligations according to the NHSE constitution: nice.org.uk/about/what-we-d...

gov.uk/government/publicati...

'You have the right to drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for you.

It is good to see that CLLSA is mounting a coordinated campaign with all involved with the recent publicity through the media, The Times, the clinical community, UK CLL patients and stakeholders to try undo this wrong doing, Leukaemia Care are working on this as part of this too

All England CLLSA members have been contacted by email this morning to write to their MPs, a good idea, i think we should also bear in mind that NHS Wales are not restricting access but following guidance.

This decision by NHSE is creating a potential therapeutic void for clinicians wishing to treat English relapsed NHS patients and a cross boarder postal lottery, putting many patients in unnecessary difficulty, emotional distress, and at risk.

might be worth writing to Jeremy Hunt, Peter Clarke too

Nick

1 like
Reply

I agree. And I’ve written to my cll prof about it even tho I’m not directly affected by it. Something others could do. I suspect this won’t stand up to legal scrutiny.

Reply

This is disturbing and could be a sign of similar troubles for US patients. The core issue is the high prices for these new and effective treatments. At some point in the US, the insurance companies will start balking at paying as these types of drugs and their exorbitant prices become even more widespread.

It appears the drug companies have introduced a new disease called financial toxicity and it could be quite deadly.

8 likes
Reply

I'm afraid that a cap will be put on medicare patients. I have heard it suggested-

Virginia

2 likes
Reply

It is a real concern. The CLLSA has been involved with the journalist. We alll know drug costs and funding will always be a tension. CLLSA are following up with the journalist and other relevant bodies to ascertain the situation. however the CLLSA members should always lobby MPs and NICE as it gives more power to us all!

Marc

6 likes
Reply

Marc

Absolutely agree we should be lobbying our MP.

However, before doing so we need full disclosure of facts to ensure no one goes off half cock, so to speak.

Once CLL Association has the full facts perhaps this could be communicated?

Geoff

3 likes
Reply

Good idea Geoff will check if CLLSA have any more facts

Marc

Reply

No matter where you are on the planet. medicine is a BUSINESS.

It's principal aim is break-even (in tax-funded systems) or profit (in insurance-funded systems). Anyone who thinks the patients are the most important consideration is deluded.

It's the money, honey!

6 likes
Reply

Look, all businesses want to make money. But they also all know they can only do so by helping people whether it’s by providing food they want to eat or tablets they need to take. Governments especially where there’s a national health service are able to negotiate or in some cases (uk being one) limit the price of drugs in a country. It’s a bit unfair the way Pharma companies are always blamed for this kind of thing.

Reply

How awful.

Peggy

Reply

Based on the information in the article this is quite concerning. The article is well written and engaging as you would expect from a good reporter. However, I do think the CLLSA and Leukaemiacare need to double check the information and make appropriate plans.

If this turns out to be a subtle change from NICE that will potentially have a big impact then action is needed.

I’m up for writing to my MP. I’d appreciate a skeleton of a letter if anyone is drafting such a thing. Last time we all wrote there was a draft letter to use, however this time I’ll only a framework as what came back from my ‘standard letter’ was a boilerplate reply. As my letter was probably 75% the same as many others I didnt feel justified to send another letter complaining about the MP’’s lack of effort in responding - this time I’m not letting that happen.

I just did the maths - I’m 62, another year to run on my trial so hopefully with a long remission this approach from ‘NICE’ may not impact me this time around However they must not be allowed to get away with it because next time it might be 70, not 65.

best to all, rob

2 likes
Reply

I'm with you on this one Rob.

The CLLSA and or Bloodwise should produce a letter which we can all use as a basis for our letters to our MP, government departments and 10 Downing street.

Also it would benefit to send a letter to several newspapers to get some extra publicity and see if any other newspaper would make a public campaign on this matter.

Dick

2 likes
Reply

My support is here for everyone.

Thanks for highlighting.

Sue

2 likes
Reply

The article refers to NHS England. I tried to find whether this unfair discrimination on patients who have managed 3 or more years in remission also applies to Wales - does anyone know?

Reply

I was wondering the same thing Maggie, my husband and I are both on Ibrutinib so very worrying, we are also in Wales.

Reply

I would imagine that if you are already on ibrutinib you should be ok.

Reply

Dear Maggie b - I can't answer your question but when you succeed in having a longer remission (and feel so pleased) it's almost like saying "well no more treats for you then" if you get my drift.

1 like
Reply

Exactly!

Reply

That's just terrible. Sounds like the dictatorship in the US by the medical Gods!!

Reply

This is very worrying. Please keep us updated and also let us know what we can do.

Reply

This is very scary. Does one hope fro a remission one day short of three years, or????

Perhaps the next step would be CLLSA to not only send newspaper articles in, but also to develop a generic letter that all members can send to their local authorities (MPs?) and national authorities. Certainly flood the Queen expressing the outrage of both those in the UK and the world!

A second generic letter for those of us outside of the UK expressing our disgust could also be developed.

Maybe both should be sent to authorities with a cc to a site set up so that involved organizations can came up with a count of how many people wrote in.

Variations of this are going to be world wide, in addition to the fact that there are many countries where there are no options. As exciting all of the new discoveries are, it is disheartening to know how many people can't access them now and that that will undoubtedly be true of many more of us in the future.

Reply

This is worrying news - I do hope that pressure can be applied to reverse this decision. (BTW - the Times online did not allow me to read more than the opening paragraph, but then asked for a subscription to read the rest!)

Reply

Might be worth contacting the journalist so he is aware of our comments and proposed actions - he might be able to do a follow article.

2 likes
Reply

He is keen to do so. I am in direct contact with him and he wants to hear from other patients affected.

1 like
Reply

That is good to hear.

Reply

Now that the UK went BREXIT, what is the role of NICE? Many point out NICE treatment guidelines, but with the UK going it alone, are they still relevant?

Reply

Nice is a UK body so will not die when Brexit happens.

1 like
Reply

You may also like...