I have an appointment with my neuro coming up & just wondering what the criteria is to be eligible for HSCT? Do we have to be a certain scale on EDSS or be of a certain age?
Is HSCT a treatment to cure ie prevent further relapses or does it merely slow down the progression of MS?
Also how much does it cost?
Thanks
If you have it on the NHS, it won’t cost you at all - at least, not in money terms. But be aware (or beware!) that it is still an experimental treatment, and carries risks - up to and including risk of death.
As far as I know, NOTHING has yet been proved to be a cure for MS.
There has been quite a long recent thread about it, in the light that a Panorama programme about it was scheduled to be broadcast this coming Monday, but has been put back to 25th Jan.
I don’t know the detailed acceptance criteria (note that it would be for a trial, NOT an accepted mainstream treatment), because I’m not actively considering it for myself.
No doubt if you follow the links in that thread, you can find out.
It seems pretty clear that it’s not effective for people with progressive types of MS (that’s primary or secondary), so either of those would rule you out.
I definitely wouldn’t pay money to anyone to do this to me. If you’re considering it at all, I think by far the safest way is through an official NHS trial. If the NHS won’t put you forward for it, I would suggest that’s because they don’t think you are a suitable candidate (too high risk, not enough benefit, or both).
I would be very wary (to put it mildly) of asking a commercial organisation to do it, if the NHS had already said it was not in my best interests as a patient.
Tina
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Check out the files on this facebook page and you should find the answers to your questions.
The treatment is available on the NHS, as long as you meet the criteria.
From what I have read HSCT looks to be the closest thing we have to a cure, so it will be interesting to see what Panorama make of it.
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Here are some facts from the MS Society info on HSCT at https://www.mssociety.org.uk/ms-research/emerging-areas/stem-cells/AHSCT that I posted on the other thread about this as well.
"the largest and most up-to-date of these retrospective studies (on HSCT) … has some limitations, but provides the longest-term follow up of all studies, with an average of 6.6 years. The study looked at 281 people who had received AHSCT for any type of MS between 1995-2006. 78% had progressive forms of MS and the average EDSS score prior to treatment was 6.5. Almost half of the participants didn’t see any worsening of disability for 5 years after AHSCT.
Better outcomes were seen in younger people, people with relapsing MS and people who had received fewer types of disease-modifying therapy prior to treatment. Improvements in neurological function during the 12 months following transplant were reported in 52% of people with relapsing MS and in 31% of people with progressive MS.
This study also highlighted the higher short-term risks of HSCT compared with other MS treatments, finding treatment related mortality of around 2%. To put this into context, on average, there were two fatalities for every 100 people receiving treatment. However, in the more recent years the data showed a fall to around 1.3%."
Still fascinated to see whether Panorama mention the death rate associated with having HSCT.
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Are those figures for non-myeloablative or myeloablative HSCT? The later is slightly more aggressive. I think 0-5 - 1% is about the mortality rate now. My neuro has agreed to refer me if I fail lemtrada. It is available outside of trials on the NHS and I’m coming across more people having it done. Exciting times.
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I don’t think they differentiate between the different kinds on here. I am a bit struck that only half of the participants in the study saw no worsening of disability over the five years following the study. The other half got worse, then.
You need to consider the average EDS was 6.5 with progressive MS. Figures for RR and earlier disease are much better.
The comments on this blog are interesting. I follow Barts and never before has I seen such a large response.
http://multiple-sclerosis-research.blogspot.com/2015/01/survey-results-why-are-msers-such-risk.html
http://multiple-sclerosis-research.blogspot.com/2015/01/hsct-vs-alemtuzumab-is-it-time-for-head.html
http://multiple-sclerosis-research.blogspot.com/2015/05/induction-therapies-more-science-is.html
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Thanks Humbug for the links. It seems that HSCT is essentially rebooting the immune system & undergoing chemotherapy. The decision is whether to chance the potential of risking infection or illness after HSCT which would be more severe due to our rebooted immune system, or whether to chance a healthy life albeit a life with MS which could result in more relapses and as a result a lower quality of life.
The HSCT cynics say that why would one risk potential fatality in the fight against MS which itself is not fatal. The way that I see it is if I was to relapse it could cause considerable damage. HSCT is known to be the best treatment at limiting relapses.
Just wondering how do I get the ball rolling on the HSCT?
Brilliant links Humbug. Isn’t Dr G wonderful. Years ago he was my neuro. Not that I have a problem with my current neurologist, but he’s not such a all around superstar!! And the Barts blog’s not bad either!
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Move to Wales!
You can get it done at the Heath Hospital (sorry, Cardiff University Hospital), an din the Swansea and North Wales areas.
Don’t have details, I’m afraid, or who pays.
Just another example of the inequalities of treatment under the present [deleted] Government
Geoff
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According to info on Barts 50% of deaths in MSers are caused by MS so the it doesn’t kill you line is not strictly true.
In respect of getting the ball rolling you need to meet the criteria above and get your neuro to refer you, or get a private appointment. The UK HSCT facebook site provides much information.
Just noticed this post…awesome if you ask me!
It seems we finally have a settled date for the Panorama programme.
Mon 11 Jan 201620:30
BBC One
Can You Stop My Multiple Sclerosis?
Panorama
100,000 people in the UK have multiple sclerosis - an incurable condition that can result in permanent disability. Panorama has exclusive access to patients pioneering a crossover cancer treatment that has enabled some MS sufferers with paralysis to regain their movement.
I’ll be watching it. I so hope the programme reaches the MS masses. HSCT offers so much hope yet so few people seem aware of it. People power is needed to get it mainstream. Its doable, think of what the AIDS movement achieved.
Hi Guys, I’ve been talking to a top Cell biologist/doc in India, he’s doing stem cell trials using umbilical cords, he’s also doing the same trials as NHS but he believes using umbilical cord cells from a donor is much more effective, rather than using patients own bone marrow stem cells & having to do chemotherapy. He also believes in doing the Zamboni ccsvi procedure which he’s found works much better using umbilical stem cells.
Before everyone says I’ve been talking to some crackpot, I checked his credentials, he’s a leader in his field of stem cell research.
The question isn’t whether this treatment works, the question is why is it not widely available on the NHS!
I’m a bit scared to post on this site! Can’t handle stress! I’ve already had quite a few assaults since I’ve been posting on this site, Please let’s play nice!
Stem cells are the future! In America they have discovered not one but two ways of how to grow teeth back! Soon they will be able to grow legs back, its not that far away! I believe they can stop the progression of MS with stem cells, from the ‘research’ I’ve been doing!
We need to pressure the government to get stem treatment available, even if it was only for a couple of thousand people to try it? I’d try it tomorrow even if there’s a chance of dying! I’ve had a good life I’ll leave on a high! & if it works good life will continue!
I am actually planning on going private abroad but I’m a bit p**sed that I have to 1) travel to the other side of the world & 2) pay a small fortune. I’ve paid my taxes & ni, it should be on NHS! & yes there is only a 70% chance it will work, it’s not guaranteed to work on everyone.
HSCT is available on the NHS at Kings in London, as long as you meet the criteria.
http://multiple-sclerosis-research.blogspot.com/2016/01/london-ms-ahsct-collaborative-group.html
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I think that your information is not of good quality. I’m not trying to be aggressive about this - however the stuff you have posted does not line up with stuff that I have read on these subjects. When you have posted references, many have them have been old. Do you have anything more recent that we could read so we could understand the cure that we would all love to find exists.
I thought that the Zamboni ccsvi procedure had been pretty conclusively rebutted?
Actually, makeadifference, the real questions are not just about whether the treatment works, but why you think it is new.
Balloon angioplasty + stem cells is not a new treatment - it is at least three years old.
Right now you can get it done in India by a Dr Gupta at Noble Hospital, or in the Dominican Republic at The Regen Center.
Not quite as experimental as you think.
Why is it not widely available on the NHS?
Stem cell treatment certainly is available, as whammel pointed out.
However, for any treatment to be offered to the general public, there are a number of steps to be gone through.
A good qualified research team may find it easy to get clearance to undertake trials - but then they have to find the money!
If a procedure can be shown to work most of the time, then it is possible to perform a cost-benefit analysis to see if it will actually be cost effective. It’s sad, I know, but the NHS does not have unlimited funds.
So if balloon angioplasty + stem cells is shown to work over (say) 80% of patients, and the cost is no more than (say) 18 months of a DMD, it would probably be passed to NICE to decide if it should be offered to the public.
If it was to be offered, there would probably be some stipulations as to who could get the treatment, like degree of infirmity, age, and similar things. It is all about getting the best value for the public pound.
When some researcher decides that the time is right, then I have no doubt that there will be a bid for funding, and a trial, and the whole routine will start.
Why rush? Just remember what happened when Thalidomide was rushed into general availability, and that was not even to cure a serious problem. Or check out the story of one of the pioneer patients for stem cell therapy - Stella Thorley’s blog on the MS-UK website.
The whole business of new treatments is not quite as black and white as thu think.
Geoff
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