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It is disappointing news with regard to the withdrawal of pomalidomide and Revlimid (at first relapse) from the Cancer Drugs Fund.
Myeloma UK are continuing to work with NICE on getting drugs approved for use on the NHS without the need for them to be provided via the cancer drugs fund as we believe this is a better sustainable long-term solution. Where drugs on the cancer drugs fund have had a no from NICE we continue to work with NICE and the pharma companies to see what scope there is for that decision to change Please do keep an eye out for any news of developments on the Myeloma UK website.
Meanwhile for further clarification, here is the link to our Q&A
http://www.myeloma.org.uk/blog/news/myeloma-drugs-removed-from-the-cancer-drugs-fund/
Hi Ellen thanks for the information, looks like we just have to hang on and hope for the best. If there is anything we can do to help influence the decision making please let us forum users know. Jeff
Hello Jeff
We have just posted an update on our website on our actions and responses :-
http://www.myeloma.org.uk/blog/news/myeloma-uk-actions-and-response-to-faqs/
I hope this is helpful.
Ellen
Thank you Ellen for your post, after having my mum diagnosed with MM just over two weeks ago I could hardly believe the news of these two drugs being dropped from the CDF. Obviously my mum is only just starting Velcade treatment so it doesn’t affect her quite yet (I hope not for a little while anyway) but I can see that she is one of the people that look set to be deemed ‘too expensive’ by this government to help in the future.
I understand from your post that Myeloma UK is doing everything they can to get these reinstated via NICE rather than the CDF but if agitation from carers and patients alike can help to focus government attention on the issue then I for one would be very willing to lend my support to any kind of protest etc that you think would be effective. This must be a terrible time for anyone approaching their first stage relapse, it is bad enough knowing that I and my family are likely to be faced with this in due course with my lovely mum but what could we do now to help those in most immediate need? Could a media campaign via Facebook and Twitter help at this stage or use of petitions etc? I am a graphic designer and I would willingly have a look at creating some Facebook type protest graphics for example if it helps. Perhaps you could offer some advice to us as to what kind of pressure/actions might be useful from carers and patients to bolster your arguments.
Thank you for all you are currently doing.
As far as I am aware, Velcade is not affected by this. This is apparently the `standard’ Myeloma treatment available across Europe, from which I suffered crippling side effects – and it did not work.
The next down the line, for me, was Lenalidomide/Revlimid – which was only effective for c10 months – so I transferred to Pomaolidomise/Invomid in August. Initial indications are encouraging, but I am running out of options. The surreptitious meddlesome top down privatisation of the NHS, and the horrors of TTIP/ISDS, continue in the background. Sooner or later, it will be a bean counter – not a doctor – who will decide my fate.
Well I have already sent emails to certain politicians. I don’t expect any response, I’m just a tiny minion, but it makes me feel I am doing something.
One sees Jeremy Hunt bringing in the 28 days to a definitive cancer diagnosis, when at the same time they deny patients some cancer drugs. Doesn’t equate to logic the way I see it.
I know M UK will do all it can to get these drugs available for us, but I do feel we should all be raising a voice in one way or another.
Jeremy Hunt has previous for making commitments, without checking whether he can honour them. My blood tests take anything from 7 to 10 days for a result, and I invariably require a second test before my next chemo cycle can start.
He will get a bloody nose, if he continues with his threat to impose contracts on consultants later this month.
He is perfectly happy to scoop up health professionals – many not qualified to NHS standards – in conflict with Immigration Policy. If and when UK replacements are trained, will these unfortunates be deported whence they came?
I have e-mailed Heidi Alexander today, to see what she believes are the NHS priorities.
He exhorts the plebs not to go to A&E, then turns up there mob-handed on a family trip, when his little Johnny gets a sniffle.
Hi, talked about this with my consultant last Thursday -good news was p/ps down another point now at 1.7!- saying how concerned we all are. She was – and she is one I trust – not to be worried, they were confident that they could deal with remissions and saw no real cause for concern. She is not one to mince her words, she tells you as it is. Has anyone discussed it with a consultant? Lost a good friend this weekend, he had run out of options, such a nice man, I shall miss his cheerful support. Although quite ill and suffering, he was always more worried about me than himself when we met at the clinic and when he visited me. Sad. I hope my comments bring a little piece of mind. Best wishes Jeff
Can I suggest that we don’t get involved in political personal slurs however well intentioned, I can’t see the value to the campaign against the actions being taken concerning the withdrawal of the drugs Jeff
I agree with Jeffery that political slurs are unhelpful, reminds me of the debates in parliament!
I think M UK is correct in that the CDF is an anomaly. What is needed is a NHS policy at central level regarding funding for medical treatments which are ongoing and cost a lot of money.
One of the areas which really has been left unsatisfactory is the possibility of patients co-funding drug costs, for ones which are considered too expensive by the NHS, without opting out of NHS care to become private patients. Some families will try and find the money for part-funding a drug unavailable through the NHS, but could not afford full private care for treatment.
Secondly, the drug companies make huge profits so should not be milking the NHS. Some patients do well on the drugs others do not. It is patients who enter trials to help the drug companies to make their case for the drug. Doctors and patients take risks not knowing whether and for how long the drug will work, but using the researched information. So the price of a drug needs to reflect this and it does not it seems.
Finally, the issue as a patient that is of concern is whether the newer treatments for myeloma will actually ever be routinely possible on the NHS and how this affects the improvements in life expectancy seen in recent years. It is obvious that although newer, more flexible treatments have been available in the USA for those whose medical insurance is sufficient, the life expectancy statistics for patients there and over here are similar. This could be because although many people in the USA are covered through health insurance many others are not fully covered. So we see a life expectancy figure that is similar to the NHS where drug costs too have been an issue with NICE approvals. This suggests that without the wider range of treatment options in myeloma life expectancy figures may stall or reduce here. Not a comfortable position for a relatively rich and advanced country, whose cancer survival rates have not been the best. Maybe that is what needs to be plugged.
A fact is not a slur. It illustrates the callous disregard of those in charge towards those of us at the mercy of their decisions. I think that I am entitled to be angry at the posturings of amateur politicians with little grasp of the real world.
However, I did not even mention TTIP/ISDS, which will signal the death knell of the NHS. Politicians are trying to break the NHS, as justification for handing it over to the private sector. If the Pomalimide stops working, I have no idea what happens next. In those circumstances, I would prefer that my fate were decided by a medical professional, rather than a bean counter.
This is a political issue, and will not be resolved without some action at a political level. Fortunately, last Saturday gave a glimmer of hope that there is an alternative.
Alex, please don’t think that I unaware of the political aspect of these problems. However I do feel that blaming/accusing individual politicians is a waste of effort, which hopefully can be better applied. What political party has ever carried out what they promised when seeking power. I would add that I am actively supporting the campaign against TTIP.I have a daughter who had a stroke, when in hospital lately was moved wards 9 times in 10 weeks by some bean counter so I don’t like them either!!, My friend that has just died was one for who palidomide had stopped working with nothing left to try. Anyway I just hope if we work together we may be able to influence decisions
I do not want to labour the point, but the problem is political – and it will require a political answer. Not only Myeloma patients are affected by the CDF decision, and it makes little sense for the minister to make fatuous commitments to 28 day diagnoses – then deny the treatment upon the basis of cost.
However, I have taken a practical approach to this problem – not just via this forum. I have contacted the other Support Groups with which I am associated, my local MP, and Heidi Alexander, to see what – if anything – is being done about it. If we sit back and do nothing, nothing will happen – and I am not quite ready to put on my wooden overcoat.
Point taken, letter to Sir Allan Duncan to be composed and sent forthwith!! I shall wait until steroids wear off though.
The reason why I am up at this hour, is that Monday is my heavy dose day – and I am in that zone where I am completely knackered, but cannot sleep. It usually wears off by Wednesday.
Over the last 4 years since diagnosis, it feels as though I have lived through the first 2 lines of Bohemian Rhapsody.
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