Director of Research from the MS Society was on this morning talking about stem cell treatment. To be honest it makes me cross as it seems that they have found a ‘cure’. Now everyone I meet will be telling me about this magic bullet. But when you read the detail 110 people in England have taken part in the trial all who have very active RR. Treatment is very aggressive, involving chemo and a month in isolation as the immune system is destroyed. Of course I am sure this will eventually be rolled out to many more people but for most, at the moment at least, this is quite a long way off.
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I heard a bit on radio 5 this morning and they are probably referring to the HSCT trial in Sheffield, although the treatment is already available on the NHS. The criteria is quite strict, but it is possible. Multiple Sclerosis Research: #CaseStudy: Are you eligible for HSCT in London?
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What really annoyed me was that on both last night’s radio news and this morning’s TV reports, the type of MS they were treating wasn’t stated. Such a sweeping statement as “A cure for MS” is deplorable. Anthony
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I agree totally, I Have already had three phone call this morning From well meaning people. I was diognosed with Leukaemia a few years ago ( now in remission) the treatment l had was very similar to this and believe me it’s not pleasant, in fact I’ve already told my family If it ever came back l wouldn’t go through it again. I just wish they would stop throwing these miracle cures out to people or at least inform them of the process it involves. Yes we would all love a cure , to be able to do simple things each day would be a miracle for me but I’ve had this dreadful disease for over twenty years and would love a cure but please no more false hope.
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Yep I agree with Charlie b I haven’t had any phone calls yet but as Anthony said Such a sweeping statement as “A cure for MS” is deplorable.
people will judge us as curable
Don
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Assuming they were talking about the trial in Sheffield, this page might help. Autologous Haematopoietic Stem Cell Transplantation (AHSCT) at Sheffield Teaching Hospitals This is the BBC report. Stem cell transplant 'game changer' for MS patients - BBC News
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To describe this treatment as “a cure for MS” makes me think of my husband and son, both of them have had kidney transplants and I get sick of people saying oh they are cured then - no they are not they still have end stage renal failure it is being treated with the transplants. In fact the immunosuppressant medications they must take for the rest of their lives leaves them vulnerable to other things. However the transplants have freed them from the restrictions of dialysis and extended life for both of them.
I wish all those who have had the stem cell treatment for MS the very best possible outcome. However I am of the view that it is too early and unproven to call it a cure.
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I haven’t had any phone calls or texts yet about this one, probably for 2 reasons. 1, All my “old mates” left me years ago and have moved onto new friends so really don’t give a ****. 2, All my “new mates” have MS and realise this is “just another possible treatment for a certain type of MS”. Lets not get over-exicited, I suppose any news should be good news, and progress is progress, but certainly not a miracle cure. apologies for being blunt! Charlie
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I find it difficult to see this as anything other than good news and a welcome treatment option. Does a cure mean a reversal of symptoms, or no further damage? Either way it’s not likely to do me any good, but offers real hope for the relatively newly diagnosed and perhaps even those a little further down the road. I doubt these sort of statements are made lightly - Prof Basil Sharrack, neurologist at Royal Hallamshire Hospital, told me: “This is interim analysis, but with that caveat, this is the best result I have seen in any trial for multiple sclerosis.” This is the BBC News report. HSCT Stem Cell Transplant for Multiple Sclerosis - YouTube
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I tend to agree with Whammel. The words used are ‘game changer’, not ‘cure’. It’s only the uninformed who hear the news and think this means it’s a cure for everyone who currently has MS of any variety.
It’s brilliant news for the future. Just because it’s not something that will affect most of us, doesn’t mean that it’s not excellent news. I’m really happy for the people who will have a massive reduction in both relapses and disability in the future.
Just like any other disease modifying therapy, there are huge risks, the treatment isn’t easy, side effects are many, but the potential benefits are terrific.
Sue
Yes i also agree with Whammel. I’m sad that this treatment cannot help everyone, and that there will be many people ineligible as their MS may have progressed too far for it to be of benefit. But there are many people (I’m one of them), who are quite newly diagnosed with RRMS, and the possibility of a treatment (albeit quite a gruelling one), is a small light at the end of the tunnel. I for one will be exploring this option if it becomes available, and i would be interested to hear from anyone who has discussed this already with their consultant/neuro.
Early days of course, i suspect it will be some time until they thrash out the finer details, but positive news nonetheless.
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Just also to add to the conversation, how many people do we think this might help? If we said 50% of the 100k people were RRMS, then 50,000 * £30k per person is a very very very large amount of money! NICE will do its normal benefits analysis assessment, how many people do we think might get this on the NHS in order to prevent any “possible” relapses? Think we might need to start saving, rather than waiting for the good old NHS to stump up the money.
My argument is with the reporting, not the announcement. The headline on the Today program said it was a “breakthrough” (it’s not, it’s quite an established procedure) in the treatment of MS - which they then failed to qualify at all - it’s a for SOME people with MS. I think it’s bad journalism, but it’s what I’ve come to expect - how many times has a cure for cancer been proclaimed?
How many people, even those with MS, realise there is more than one type of MS? It’s not just that our MS has progressed, it’s that it is a different form of MS - that was never mentioned either.
I have PPMS - it’s practically a different condition to RRMS, so it would be good even if they just qualify with some comment like “HOWEVER THERE ARE STILL NO TREATMENTS CURRENTLY AVAILABLE ON THE NHS IN THE UK FOR PROGRESSIVE RATHER THAN RELAPSING REMITTING MS”. It’s one sentence, is it really a lot to ask?
And as for the treatment itself - I also think it’s great news, and I hope they make it available to everyone who will benefit - I agree with Anonymous above that NICE will try to find a way to restrict it, but I really hope that they don’t manage it, and if you will benefit and want to have the treatment, you should be offered it without any further ifs, buts and maybes.
Jo x
The BBC interview said that this treatment costs £30k, as a one off cost, versus approximately £30k per year for MS drugs and hospital treatment per patient. So it would potentially save the NHS a huge amount in the longer term.
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The BBC website report is a much better report than the one I heard on BBC radio, far more balanced and nuanced.
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One off cost or not, if it even reduces the amount of relapses and related disability, that is a huge cost saving in itself.
And it sounds like it’s MUCH better than that. Let’s hope NICE see it like that too.
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If someone were to do a cost benefit analysis it would be clear that the £30K cost of treatment is much cheaper than the cost of multiple drugs and the cost of someone having to stop working therefore paying tax etc. In the real world it would take a bit of imagination and I wonder if the NHS would bite the bullet should this treatment become mainstream? 3 treatments = 90K??? I think they would pass out.
As someone with a relatively new diagnoses of rrms, my, selfish, personal worry is ‘will I be able to get this treatment in time’. Ie. Before it becomes spms.
Sarah, I hear ya! I feel exactly the same x
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I can sort of see where Anon was coming from re the costs and NICE. People that currently take a drug costing £30k a year, and then they are going to swap to a one off £30k then that makes total sense. It is the people that don’t take a £30k drug, that suddenly see the option of spending £30k that they weren’t going to spend, wanting to spend it on something that possibly might stop something possibly happening. A lot of these £30ks will soon add up, and there was a lot of “possiblies” mentioned. That will be the get out, and fairness means all people should be judged the same, in the example of DMD takers and non takers, people are not the same. I think this is going to be a concern. Charlie
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