[MothasParticipant]

http://www.myeloma.org.uk/blog/news/myeloma-drugs-removed-from-the-cancer-drugs-fund/

I don’t know where to being really. I’m on Rev at the moment so will continue to receive this but new patients wont. Pomalidomide was the next drug in line when Rev fails. I’m devastated this decision has taken away my hope and reduced my life expectancy by several years.

It’s set myeloma treatment in the UK back 10 years.

What can we do?

[jeff605Participant]

Hi Tom, I am in the same position as as yourself, on Revlimid and Dex, which is working well at present. As you say, devastating that what is probably the last fall – back drug has been put out of reach to us. It has kept a friend of mine going for several months although it has now ceased to work for him. It’s even more annoying that this is a cost – based one, rather than the effectiveness of the drug. I wonder if there is anyway we can protest this decision ? Jeff

[alexplypinParticipant]

I was moved from Lendex (Revlimid & Dexamethasone) to Pomalidomide (Inmovid) & Dexamethasone in July. I await a response from my Oncologist as to how this will affect me, as my next cycle will start on 21st September.

As far as I am aware, <span style=”color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; line-height: normal;”>Bendamustine or Carlfizomib are the only other alternatives – and I do not know the funding status for these.</span><span style=”color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; line-height: normal;”> </span>

[alexplypinParticipant]

I do not know what happened there?

Bendamustine and Carlfizomib are apparently alternatives to Pomalidomide, but I do not know the funding status for these.

[MothasParticipant]

Neither of these new drugs were accepted into the cancer drug fund

[alexplypinParticipant]

Gulp!

[jeff605Participant]

I don’t know if Myeloma UK could give us some guidance on how these decisions will affect our future treatment, it is certainly very disturbing information with huge implications on our future treatment and survival. I will look at contacting Myeloma UK to request further details. Jeff

[rebeccaRParticipant]

Scary times indeed, totally devastated – we do not have a great arsenal of drugs and this certainly helps deplete our cupboard somewhat. Pom is supposed to be better for kidneys with a higher dose than rev could give without damaging kidneys so I was hoping it would be there for me in the future. I read the US site a lot with tailored treatment and availability of lots of new drugs/developments with envy and resignation. I often wonder what’s the point in developing new drugs because we have to wait years for the trial process (remember some of us will be exempt for trial purposes) and then it is always too expensive for us…so back to older, harsher drugs… where’s the progress in – that?. At the end of the day this cancer does not have a “trendy” appeal for funding as it is “incurable” and does not effect the masses. I wonder how long the 2nd SCt will be available if it only gives an average of 50% remission time of the 1st – when will they start doing a cut off for that also? Perhaps we will have to be like the Americans where many up sticks and move to a good treatment area – Scotland is not so far away if your options are getting limited and remains unaffected for now. If MM is a game of snakes of ladders then we’ve certainly slid down helluva way. Totally gutted.

Rebecca

[alexplypinParticipant]

I have had 1 stem cell transplant, which gave me 10 months’ remission. I was unable to generate enough stem cells for a 2nd, so the process was abandoned – and this is extremely expensive. The mortality rate for this process increases significantly as it is repeated, and no one is ever likely to have more than 2. I also have 7 younger siblings, but they no longer consider transplants using cells not generated by yourself – again because of the risks.

I have e-mailed my Oncologist, Myeloma UK, Maggie’s Community, and my local MP in order to find out what I am supposed to do in November. I will not go gentle into that good night.

 

[louishenryParticipant]

Celgene, who market Pomalidomide,have assets of over $13 billion and net income of $1.5 billion. Obviously their pricing structure shows they care more for their shareholders than us myeloma sufferers. I think this is part of NICE’s price negotiations but we are piggies in the middle. Drug patenting is the problem. If only drugs were genetic as soon as they were licensed.

[willjames2Participant]

I agree with louishenry. I think, I hope, that Celgene will reconsider their pricing to the NHS now that they have told them they will be cancelling the drugs. Surely having spent all that money developing the drug they would rather get some return on their investment with a lower price point than nothing at all if they can’t supply!

I have read an article elsewhere, where the CEO of Celgene UK is considering pulling out of the UK with clinical trials etc because of this decision. He sounds like he wants to take his ball home. I reckon it’s all posturing…hopefully they will see sense and come back to the table to discuss. After the all the UK is a large market and who wouldn’t want a piece of that business if you were a Pharma company?

The cynic in me believes that large Pharma companies don’t want a cure…where’s the money in that? I believe they want to supply a drug, paid for by the NHS, which you would need to take for the rest of your life, which will help manage the disease…that’s the where the money is, on the constant comeback!

I hope I’m wrong, I really do, for all our sakes.

ps Sorry for the rant

[MicheleParticipant]

Part of me being able to cope emotionally with my MM is the thought of having plenty of options in the armoury and therefore being able to plan ahead.

The news that rev. and pom. have just disappeared has really unsettled me.

It seems that the bods who airily make these decisions have no idea how it affects folk with the cancers.

I’m very much hoping that I’ll remain drug-free for a lot longer yet, but it was comforting to know I had future options and that first relapse would be OK to cope with. Now I feel rather distressed.

• This reply was modified 9 years, 2 months ago by  Michele.

[duskParticipant]

The UK is getting to be a small market for newer myeloma drugs e.g. compared to USA where myeloma patients are not only in higher numbers, but the insurance, for those who can afford it, gives their treating clinicians more opportunity to make a case for their patients individual treatment more readily.

The NHS is being told to make savings and it is rare diseases which are not in the public mind that loose funding. In England we have only recently introduced many of the newer treatments into the myeloma armoury to try to make it a ‘chronic disease’ .

The NHS may be a free service, but if drugs or treatment are deemed too expensive then they will increasingly come under scrutiny when budget cuts are sought. Human life has become dispensable by committee decision.

Moving to Scotland may not work as apparently health regions make decisions locally as to whether a drug will be funded, rather as clinical commissioning groups do in England.

Writing to MP’s etc. may help, but politicians have their own pet projects so I am unsure how much can be changed if Celgene and other companies do not change their pricing to the NHS. The picture is depressing.

[susieParticipant]

I feel the same as all the previous posters. I’m absolutely gutted. I don’t understand that pom appears to be available under the NHS in Scotland and Wales, but in England it isn’t.
I shall be emailing my MP and anyone else I can think of. However this is going to take everyone bombarding the officials until they give in. I’m sure Myeloma UK will do all they can to help us.

Has anyone started a petition on change. org ?

[susieParticipant]

Just a further thought. That lady from Nigeria that had £145.000 worth of nhs (maternity) services would have got almost 19 cycles of Revlimid.!!!

[Author]

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