HSCT Hangout

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By popular demand, our first Barts-MS live hang-out tonight (23rd January 2019), from 17h30 to 18h00, will be on HSCT.

The live hangout will accessible via this link,  or it can be viewed below. It will automatically be recorded to YouTube so you can watch it later if the time slot is unsuitable for you. If you watch on YouTube you will be able to ask questions using the YouTube chat function during the live recording.

Based on the early feedback we have produced a list of early questions that we will address. Please let us know if you have any other questions.

About the author

Gavin

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

27 comments

  • How cost-effective is HSCT for the NHS, in comparison to other DMTs, for the group of patients that are most likely to benefit? Is it likely to be offered across all areas of the UK in the near future?

  • Brilliant Form! Keep them coming!

    Do provide updates on mesenchymal Stem Cell Therapies, neuroregeneration research, and current Cladribine Studies in future hangouts.

    Thanks!

  • You do realise that the highest death rate is UK. Unfortunately the state of the NHS lets us down with this. I’ve lost friends to ‘infection’ that shouldn’t of done during HSCT.

    So glad most of our international hospitals have a far better attitude to this treatment.

    Sack the fat cats that do absolutely nothing in the NHS, then perhaps there would be money to treat us.

    • Is the UK death rate an overall figure or simply those for one unit? How can you verify the figures? I assume the numbers are so low that they are impossibly low to interpret.

      Not all of us have the luxury of having $50,000 to spend abroad; so the NHS will have to do. I really hate the rich rubbing our faces in their ability to shit on the NHS, simply because they have the personal means to travel and pay! Can I point out that the state of health in Russia and Mexico and wherever else these private HSCT centres offer their wares is appalling. This is just another example of health inequalities determining access to treatments and why the world is so fucked up!

      • Not all of us have $50,000 you’re right. I don’t qualify for NHS, the criteria is too tight in most hospitals, only one would consider me but there was no funding. I’m not rich, NHS standards are poor, very poor which is a shame. I can’t afford to go abroad for treatment either. If I had a choice, I would choose Russia. I have researched for years. Assuming you thought I was rich and just slating the NHS because i had money? – so wrong

        • “Sack the fat cats that do absolutely nothing in the NHS, then perhaps there would be money to treat us.”

          Yet the fact that you demand further reductions and not a an increase in the health budget is despicable. Anyway HSCT costs much less than Ocrevus maintenance and should be provided for free to all MS patient everywhere. Period.

        • I didn’t have the money I sold my home to fund treatment in Russia,and by the way the most recognized leader in the world along side Mexico.There approach to HSCT is every one should be able to access this treatment in any country in the world,their hygiene is astounding,spotless,every little in in the clinic is cleaned with anti bacterial liquid and wipes every day,you could eat your food of the floor.I never got through the criteria in the UK because I am not RRMS or in the early stages so much for the NHS and don’t ever judge people on their wealth,we all have sold some thing or fund raised for years to get the money together,they is no point in saying you can’t afford it,because every body can get family and friends together to run fund raising events,so anonymous just think again for making those sort of comments you know nothing about.

  • What is the EDSS-score-limit, i.e. the maximum EDSS score, that allows a person suffering from MS to have stem-cell-treatment?

    • If you are prepared to pay there is no limit; it is called a lack of scruples. Private healthcare is a business where the consumer is king!

    • From a rough abroad HSCT statistics, there is no good answer to that. There are patients who were at the verge of PMS and failed and patient with EDSS 6.5 that were successful with improvements. A younger age could be a good prognostic but there are older patients with a good recovery. What remains to be answered is how long these PMS patients who seem to improve, will remain stable. Because the probability of a relapse of disease seems much more probable to PMS within 2-3 years.
      I think some organisation is trying to accumulate these PMS statistics.

  • I have only just seen this today..Did not know anything about it !!!!! Dr Richard Nicolas accepted me to have HSCT… In October 2017 at Hammersmith Hospital on Weston ward !!!!! I would like to be on your next documentary…… to show MS patients who are thinking about HSCT…How well i have done from having this treatment…. 😉😀

  • Hadn’t anticipated the anger and hostility that the Hangout would generate and it really saddens me.

    Whatever the individual perspectives on access to HSCT, the NHS and private healthcare, the right to debate, to have clarification, and personal choices should be open to us all as PwMS. Importantly, let’s not forget that all the discussions and position statements are only open to those who can’t join in with all the whys and wherefore, the rights and wrongs, because they’ve been diagnosed SPMS or PPMS.

    • Would the MS Society step up here and help with funding to get this HSCT vs Dmd trial going ASAP ?? So many can’t afford this life changing treatment abroad or privately in the UK. Maybe the new AIMS ( auto immune & MS ) charity could help towards funding it too ! As this trial will defo put HSCT on the map here in the uk , not only for RRMS but PRIMARY PROGRESSIVE MS, these later people have NO treatment here in the uk at all .And support for them and their families is completely under supportive & underfunded . HSCT for MS ASAP ! ! ! !

      • I have slow PPMS and wouldn’t touch HSCT with a barge pole. Neurotoxicity, aged immune system following treatment… No thanks.

      • AIMS would LOVE to support such a research programme, Gavin, but as you know, we are a very new and small charity and our funding efforts are largely to support patients to actually get this treatment – we know that it works. Would yet another RRMS trial really be of benefit to the PMS population.

        We would, however, welcome a dialogue with you and the others we mentioned in our private message to you a few days ago. We await your reply!

    • The total cyclophosphamide (for the whole procedure) used in the US and UK is more than what is used in Mexico and Moscow.
      Extra cyclophosphamide is used for mobilisation and the full 50g/kg is used for 4 consecutive days for conditioning.
      Mexico splits its cyclophosphamide into 2 applications.
      2 x 50g/kg for mobilisation and then after 5/6 days later 2 x 50g/ kg is used for conditioning.
      In your opinion Prof G, does the fact that the cyclophosphamide is split and not delivered on 4 consecutive days, as everywhere else that does NM, weaken the effect?

    • Benefit and risk needs to include risk of disease breakthrough to enable a more informed decision.

      7.20: MD said that HSCT/DMTs don’t necessarily get rid of what’s going on in the brain and that’s why we maybe sometimes see failure of these treatments.

      The Hangout, it appears, didn’t allow time for this, so more info on disease breakthrough for HSCT, Alemtuzumab etc will be really helpful.

      More info on why MD said (9.02) that the Alemtuzumab phase II data was probably almost as equally fantastic will also be of real benefit.

  • Why do you messaging it only works for RRMS when it also works on PPMS and SPMS,JUST look at the figures from Russia and HSCT Mexico want this treatment here in the UK without more stress fund raising £45 thousand pound,think of the saving for the NHSwhen this is a 1 off treatment,and much better than on DMDs for 40 years x£54 thousand,the Pharmaceutical companies and the the medical profession are the ones that profit from us by pushing their meds that make us more ill,and the meds will never halt the progression like HSCT and give us a chance to at least live,Helen Storr

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