Sunday, 17 January 2016

NewsSpeak: Can You Stop My Multiple Sclerosis?

Another date for your diary; 18 Jan 2016, 20h30! #NewsSpeak #BBC #MSBlog


MD says "This is yet another approach that academics are exploring to treat MS and we believe this programme will focus on Haematopoetic Stem Cell Transplantation (HSCT)".

Some of you think we should roll over an leave it to Pharma.

26 comments:

  1. So this is the one rescheduled from 14 December 2015 to the 11th January 2016 rescheduled to 18th January 2016. Lets hope it is a case of 3rd time lucky.

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  2. https://www.mssociety.org.uk/ms-events/panorama-documentary-bbc-one

    A Panorama documentary about MS and stem cell treatment will be broadcast on BBC One on Monday 14 December at 8.30pm.

    The documentary was filmed at the Royal Hallamshire Hospital in Sheffield and focuses on the experience of patients who underwent Autologous Haematopoietic Stem Cell Transplantation (AHSCT) some time ago and had dramatic results, as well as two patients who have just started the treatment. It also features interviews with the researchers involved.

    The MS Society wasn’t involved in the documentary itself but we are in touch with the researchers and the Panorama team.

    What is AHSCT?

    AHSCT is being investigated as a treatment for MS. The aim is to remove the harmful immune cells that attack the brain and spinal cord, and then re-boot the immune system using a person’s own (autologous) stem cells.

    The Research Team at the National Centre will be happy to help with any queries.

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  3. Prof. G. HSCT implode if the immune system as a whole, drastically, EBV is hidden on B cells, to eliminate harmful immune cells would eliminate the virus too? And what would happen to the person who made the HSCT and were reinfected by EBV um the future?

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  4. So excited to see this program being aired. I really hope MSers (and charities) will start to shout from the rooftops when they see it. So many have not heard of HSCT at all, so little interest from the MS Charities - much to my amazement as it seems the best thing out-there.

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  5. Prof G - in the past 18 months I've seen your view on the efficiency and safety of HSCT soften and almost indorse the treatment. Do you think that all the effort you and your team put into Clabridine would be better focused on HSCT as it is proven to be more effective treatment and would be better for your patients that Clabridine? Or do you think that pursuing a drug with similar efficiency as Alemtuzumab and Natalizumab is a better use of your teams time?

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    1. ProfG can speak for himself about his sottening. I know that ProfG did time on the wards in bone marrow transplant clinics so he knows what people endure, I do not but if you look at the data then you have to take notice.

      Although there are trials ongoing I am not sure what has been promised by the EMA/FDA about approving this and will it just get reserved as a third line fallback. If the results are so startling then maybe it should be offered first line if people are willing to take the risk.

      However the naysayers could come out of the woodwork and say it is not blinded etc. blah blah blah,

      I have softened my views as the safety has got better a 7% mortality rate was very high but a 0.5-1% mortality rate is still very high and would do what I can to help any development to support treatments

      But as to the cladribine story ProfG has put little effort in this as he has been conflicted because of his involvement with movectro. He is supporting the attempt to get it back, but would be happy if generic cladribine arrived too, but to be fair it is others who have put their energies into this.

      Should we drop every thing and do HSCT. You do what is in your skill set and ProfG is supportive of the Zeus trial idea. How do you work out if it is really better than alemtuzumab for example
      here is insufficient evidence to suggest that it is cost effective above use of DMT and would like a head to head study but would this be possible given life span of some DMT. However Dr Ben Turner within the group is part of the London Consortium for AHSCT so we have embraced this already.

      However as to comparing cladridine to HSCT they both give about 50% NEDA but one costs the NHS apparently £90,000 and the other would be £2,000. So where should we put our effort. If £90,000 is the cost what battle willl there be with NICE. Is this price correct I have not idea. It is not the cost of the reagents but the cost of people time etc have to factored into this.

      However, it is academics against pharma

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    2. I see that the cost is reported at £30,000 but £90,000 was what I told when I asked a neuro last week but an happy to be corrected but £30,000 is still 15 times more than 2,000 and it matter not at he moment

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    3. Sorry Prof G did his stint looking at BMT patients 20 years ago? Is that really valid? Medicine/science/treatment has moved on a lot.
      Clabridine is as efficient as HSCT, is this what you are saying?
      Also - u don't mention the fact that if Orceluizmab was successful in treating progressive MS, that would mean that HSCT will have benefit for SOME progressive patients as it effectively uses the same mechanism at Orceluizmab but more intense treatment r. (Again a fact that you MD have said is likely to be true)
      Also - do you honest thing the drug developer for Calbridine would put in on the market for £2000? If you do I think you are wrong. Isn't Alemtuzumab as Campath still only £1000/£2000 for cancer but £65000 as Lemtrada for MS
      Ironically - one of the risks of Alemtuzumab is Good Pastures Syndrome, treatment, cyclophosphamide or rituzumab, which as a combination is used in HSCT....

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  6. Added just now to the BBC news website..
    http://www.bbc.co.uk/news/health-35065905

    Cancer treatment for MS patients gives 'remarkable' results

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    1. Wonder if the cladribine naysayers will be out in force as this is labelled as a cancer treatement and this has been a problem of theirs.

      However BBC are up to their reporting ricks so they say someone who is paralysed walks again. However this is probably regression to the mean and the person is paralysed when they have active disease but when that is stop the inflammation subsides andthe nerve conduction returns. This is not the same as in people with inactive disease that cannot walk. In my opinion it is unlikely that permanenetly paralysed people will up and start walking with few treatments. This is where the media hype the story and create false hope and means alot of people blowing their money with Quacks

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    2. In BBC story it says
      P"rof Richard Burt, Northwestern University, Chicago carried out the first HSCT for MS as long ago as 1995 and is coordinating the international trial which began in 2006".

      So we are 10 years into the trial and it works according to Dr Burt (should this be said before the study is complete) but when the trial finishes then what? Since 2006 there have been alot of DMT approved. I dont know the answer. I haven'tbeen following the story so someone can enlighten us

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    3. I am totally in favor of Cladribine, more than HSTC. Myself being NEDA with Copaxone Generic Cladribine to get the real status recognized therapy for MS (other than off-label) I will treat her. I know people in Brazil who made the HSTC, some are good, are NEDA, others have continued to have progression of MS and passed to SPMS. So I support the Cladribine until Ocrelizumabe hit the market, the Cladribine is the only fact that drug enters the brain, disrupts the BBB and can do something positive in the CNS. And if the EBV hypothesis is confirmed she can act in infected B cells, suppressing them, and perhaps eliminating the virus (this is my chance :)) ... In addition to the issue of cost ... And people forget that the dose given to the treatment of MS is much lower than that given in the treatment of leukemia ...
      And what MD and DRK has shown in its various publications here in the group and cladribinems4: Generic Cladribine is a reality for treatment of MS, it meets all the requirements, what you have to do is that we MSers have access to it. If you look at the previous publications you will see that Merck wants to relaunch the Movectro, costing obviously a thousand times more ...
      Efforts to HSTC are laudable but why not think the same way about the Cladribine?

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    4. MD1, my understanding is that the aim is to get it FDA approved sometime around 2020. I believe the comparator is predominantly Tysabri, and patients must have failed at least one DMT to get onto the trial (suggesting this will be put forward as second line).

      Will be interesting to see whether the regulator asks for more...

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  7. Let me start by saying that I am all for HSCT being investigated for safety and efficacy. More options are great, but in certain corners of the online MS community HSCT is the panacea for MS, and any other therapy is a "big pharma" conspiracy. Perhaps this is because people misunderstand the role of stem cells in the treatment, or maybe it is just a side effect of having a passionate community built on anecdotal evidence. I do worry though that the true believers undermine rational examination of the treatment.

    In Australia there is a decent sized community of people undertaking this treatment overseas and a handful as part of trials here. The thing is that for all the success stories there are also some significant failures and some serious complications that have arisen for individuals, near death experiences, a year of shocking health spent in and out of hospital, and cases where the treatment has been a complete (and hugely expensive) failure.

    The interesting thing is how these sad instances are dealt with by the community. In short, they are scarcely acknowledged. Alemtuzumab's side effects are significant also and are held up as being evidence of inferiority, but it's not in the same league as that! This dogmatic belief in the anecdotal evidence of HSCT is perpetuated by the echo chamber of parochial online communities.

    I get that it's a natural human reaction. Narratives are hugely appealing. But we need to be careful that we don't let it cloud our decision making.

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    1. Well said Anon 5:41.

      We must stress that there is a significant risk of this therapy and therefroe it needs to be done in a reputable centre and even then you need significant aftercare.

      This stem cell treatment is about replaceing the immune system and not about replacing the nervous system and therefore you must be active and this is not a panecea for progressive MS.

      If you are having this treatment make sure you sign up to the MS register before you start so that your journey can be noted and captured

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    2. When I first heard this on the news I thought the stem cells were being used to repair nerves(silly me). I had serious exacerbations in the early years and recovered enough to enjoy life again. No drugs no treatment, that's why some of us are sceptical about the hype.

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    3. MouseDoctorWednesday, January 20, 2016 12:37:00 pm
      the community is made up of a cult who believes hsct is a cure and their job is to convince every mser they come across hsct is the answer and all neuros are lying to them. they actually have a secret group into which they invite people who have been engrafted where they talk about problems they are having, so that potential hscters don't find out about them. i blame the medical community for this sad state of affairs as much as the zealous hsct proponents. the truth is in between, though hsct is certainly not a cure. my partner chose to have hsct regardless. My partner undertook the treatment with a cohort of about 25 people, most of who are now about 2 to 3 months post. One had an in hospital infection which resolved within 4 days with heave antibiotics and one had an infection on return to Australia which resolved within a week. I'm aware of HSCTers needing hip replacements (I forgot the name of the condition requiring it), whether that's due to HSCT or steriods given is still up for debate. My partner has had no side effects and is doing wonderfully. I wondered for 10 months whether we had made the right choices and how I would feel coming back with her dead. I decided then that I made the decision rationally, that I read the same studies neuros did, that I asked them about it and that they were unable to provide me with any rational reason or examples of things that could go wrong (other than it's a significant risk you could get an infection and die) - what does this mean? i could cross the street and die. what are the concrete risk my partner now faces post hsct? (i have researched this extensively and have formed my own view but i'm wanting a researcher's answer). she had hsct in russia, meaning cyclosphomide and rituximab, no ATG. she is 40, healthy apart from ms, her breast cancer was estrogen based and is 2 years of being declared in official remission (ie. she is 8 years post cancer). I'm not asking for medical advice specific to my partner, I'm asking for a detailed explanation of significant risks she faces 2 months post HSCT for the next 3 years

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    4. Made of a cult...but this reads like an evangelist. Take a step back and read. Sorry for the sarcasm:-)

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  8. MD: so what about inactive RRMS?... if that makes sense... Relapse free & no MRI progression for 2 years... Not happy to allow the shredder to continue creating subclinical damage...

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    1. I suspect the answer is no, whilst in the experimental stage as they would argue that they are not willing to take the risk, I think youwould fail the London eligibility critera.

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  9. As the BBC publicity machine goes into action, I'm preparing for the storm of messages recommending the treatment from friends and family. I've already had to gently bat away a couple of well-meaning enquiries from friends who were listening to the Today programme on R4 this morning.

    Still, it's nice to know they care.

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  10. I think Orceluizmab is going to be the end of the road for immunosuppressive therapies. If this is approved in a year or two I think all neuros will prescribe this for patients with highly active disease.

    The safety of HSCT is greatly dependant on the center where it is performed. Realistically I don't see HSCT as an approved option in the future.

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  11. The BBC site apparently blocks the viewers from outside the UK.

    Does anyone know whether the programme is to be found anywhere else (without the regional restrictions)?

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    1. Unless you have a UK IP address I guess you will be blocked unless you can find a VSPN to give you a gateway it may be harder to see

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  12. The documentary will be airing on BBC World here in the U.S on Sat the 23rd or 24th of January. I already searched my DVR and have it set to record. I am currently using ATT Uverse service if that provides any helpful info for those looking to see the program in the U.S. I am newly diagnosed RRMS with one minor and one major attack within 13 months. While I am currently waiting to see how my DMT works over the next year (Tecfidera first line). I do think it is imperative for us in the patient community to at least be informed and then take the information cautiously. I for one am definitely following the Clabradine updates as the information I am seeing looks like it would be an excellent choice for a layered therapy approach and keeping the idea of a stem cell transplant in the brain bank (while I still have one LOL) while that treatment continues to develop. Keep pumping out the info BARTMS! I am certainly grateful for this site as it provides much more valuable information than we receive in the U.S. Everything here is filtered through drug companies outreach or through MS Societies.It's sad when I read of the difficulty those in the UK have with getting the treatment of their choice based on informed consent in a quick manner, but you guys definitively have a better system of providing collaborative research information from highly respected researchers for us across the Atlantic to access. It would be nice if our collective government agencies could collaborate on the importance of early newly effective treatments and making information available to patients and how that will greatly reduce the overall economic burden of this POS called MS.Plus taking the selfishness out of the equation for our own personal situations. Think of the millions in undeveloped countries that we could impact if we could find a cheap and effective drug for them. Undeniably that would be a huge achievement for the entire world.

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