I think patients should have equal control with Healthcare Providers. I believe that HSCT is more effective and cheaper for people with MS. I agree with msintheus that with the limitations of Ocrelizumab regarding vaccine antibodies, HSCT needs to be much more readily available both here in the UK and across the globe. HSCT has evolved and should now be considered a frontline treatment. Prof G, thanks for raising this important topic and also for admitting last week on twitter that your previous knowledge about HSCT abroad was out of date. This is so very rare for a Consultant to admit this. Thankyou from the bottom of my heart.
Given the new - very serious risks of being on Ocrelizumab (no response to covid jab, covid increases mortality) I think AHSCT should be standard offer for a lot more people now. The global dynamics and risks/benefits have changed substantially and treatment guidelines should adapt accordingly.
I relapsed quite quickly after hsct. It was my first ms treatment after diagnosis. I have no regrets at all, although I do wonder where I will go from here. On paper I was the perfect candidate as per Dr Burts trial findings and the NHS criteria, I feel it is unfair this treatment locally is withheld from pw secondary progressive/ more advanced MS. Of the cohort who started treatment with me , I am the only one to have relapsed, the others are stable and some are thriving with much better quality of life.
I would have AHSCT tomorrow, if I could. I am 44, a qualified Podiatrist and PhD Researcher. I want to work, I want a body that will allow me to do the things I used to. If AHSCT will reboot me… sign me up! My brain, brain stem and spine took a good frying before I was diagnosed and more lesions appeared after I started Ocrevus. I know it’s supposed to be “the wonder drug”; however, for me, I don’t feel any better. Yes, the last MRI showed NDA, my body disagrees. If anyone would like an AHSCT guinea pig or muse… 🙋🏼♀️🙋🏼♀️
Might not be the right place to ask for this, but it was mentioned in the article so I'll give it a shot: are there any news on the state of the direct comparison trial Ocrevus/Lemtrada Vs AHSCT? The StarMS website doesn't have any updates on that (reckon the whole pandemic thing has influenced things)...
It’s good to read this, Gavin, and crucial that you’re continuing this conversation.
I do agree with your ethos that healthcare is a basic human right and that it should be free at the point of access, but I don’t think that’s a good enough reason for people not to go overseas when they have no other choice.
At AIMS we’re very aware of patients who have been unsuccessful in being accepted for HSCT on the NHS - but then told they can have it privately in the U.K. for £80k! Is it any wonder that they choose to go overseas for half the price? I know of one lady who could have afforded the private U.K. price tag, but went elsewhere on principle - if she was ‘unsuitable’ for HSCT on the NHS, then where were those principles when it came to getting it privately?
I’d argue that it isn’t social conscience that makes so many practitioners advocate against their patients going overseas - it’s a basic lack of knowledge about what’s being provided there. You yourself told how U.K. practitioners talk of ‘HSCT light’ in Mexico, and how ‘patients need to have follow up Rituximab for 2 years after they return home’ - neither of these things were accurate, and you had the good grace to correct them. I think many of those same practitioners would be surprised to know that the very doctor who they are belittling is a fellow of the Royal College of Physicians - are they?
Sadly you’re in the minority in that you’re happy to correct yourself when you get it wrong, and we need to re-educate practitioners about what’s actually on offer overseas. And of course that includes any risks as well as the benefits.
As far a a Citizens’ Jury is concerned, AIMS would love to be involved in your getting this off the ground - you’ve been talking about this for a long time now. So how about it? Can we work together on this? Can you email me at alison@aimscharity.org to discuss this further, Gavin? We have other plans that I’d like your input on too, if you have the time and the inclination!
Careful, GG, you're beginning to sound a little like an HSCT zealot, yourself! 😊 That's a good thing! I assume that by "zealot" you mean someone who is in favour of HSCT as a primary treatment for MS and doesn't mind saying so. That includes most of the thousands of pwMS who have actually had HSCT, as far as I can see.
By the way, before I went abroad at great expense for my HSCT in 2014, I consulted a local consultant haematologist and he would have been delighted to treat me here in Oxford, but was prevented from doing so by my intransigent neurologist. So that confirms your premise about where the stumbling block is in moving forward with access to HSCT in the UK. Until that access happens I'm afraid that pwMS will continue to go abroad for HSCT, and will continue to be helped by those you call zealots.
As a PWms of 30 years since diagnosis I would have jumped at the chance of any treatment, especially a potential cure. I fully understand that I am now excluded, on many levels, too late for the likes of me. It would reduce the need to find anything, anything that may help. CCSVI comes to mind for me and many others like me. You are driven into the arms of people offering unsubstantiated treatments. It’s amazing what desparation drives one too. So yes let PWms decide if they willing to take the risk on AHSCT. Life is a risk full stop. MS is like childbirth, in that it gives you the need to be courageous .
Prof, by the time HSCT becomes available first line, would you not expect a note promising drug to be coming closely behind it that is more targeted than the HSCT carpet bomb? You have talked previously about the differences between Alemtuzumab and HSCT. This would be an interesting newsletter article as their efficacy is considered on par yet the modes of action and therefore risk are very different
Yes healthcare should be free at point of contact and in an ideal world people wouldn't be forced to go for a procedure abroad; but the bottom line is we are being forced into this position. So many people in the UK are told that they aren't suitable because they are spms, ppms, no active lesions ect, it won't help them, and then go abroad and have it done and it's a successfully. Without a doubt Mexico and Russia for example are providing exemplary care and have much more experience in hsct for auto immune than we have in the UK. Many neurologists in this country are still misinformed and give out incorrect information to their patients, such as it's a new, experimental treatment with a high death rate ( I was told this 2 years ago and I attend a hospital that performs hsct!). I follow your blog very closely and I wish more neuros were open to discussion on the topic as yourself
Thanks for Clarifying. Ideally the treatment would be made available in the UK to wider range of MS sufferers. However, if it’s proven to be affective abroad, but the NHS don’t offer AHSCT to patients at a certain stage, I back a person going abroad to get the treatment, if they can finance it. To my mind and at that stage, going abroad for treatment should not be frowned upon and the patient shouldn’t be left concerned about the amount and type of support he or she will get, when they return.
Yes, as some one who had HSCT abroad, over 2 ½ years ago it should be available much sooner but I don’t agree with the criteria to qualify. I have been in remission from RRMS since my treatment. It used up a substantial amount from my husband’s pension fund and will now have saved the NHS money. I was diagnosed with CI in 2008 and formally with MS at the beginning of 2010. The first DMT was probably no better than placebo and in 2013 I relapsed leaving me having to be pushed in a wheelchair for 5 months; I say pushed because my left arm was also weak and fatigued very quickly. With the help of my MS nurse I had to fight against my neurologist to prove that I qualified for Tysabri. Under a different neurologist I was persuaded to come off Tysabri (and went onto Gilenya) after 2 years because of my PML risk. I relapsed and that’s when I started with problems with my right arm. I have an EDSS of 3 but still have significant problems with fatigue, dizziness, cognitive difficulties and my right arm and right leg in cold damp weather so obviously I wish that I’d been able to have a more effective treatment (that I hadn’t been persuaded to stop) much sooner. I went back on Tysabri but after another 2 years the neurologist once again scared the hell out of me over my high risk of a PML infection. I believe that a high risk of PML should be counted as a reason for HSCT (not just failure on an effective DMT). I had an episode at this time that I believe was a relapse anyway but my neurologist argued that it wasn’t (saying that there were no new lesions on my scan, which didn’t use Gadolinium). I was offered Lemtrada but when I saw a well respected neurologist privately he advised me not to take Lemtrada. I was not advised to avoid going abroad for treatment but was told that despite him seeing one new lesion on the MRI scan of my spine I did not qualify for treatment under the NHS. Unfortunately like many people the previous MRI scan of my spine had been carried out 2 years before (so even if there had been an active lesion or 2 new ones I still would not have qualified.)
Is it unreasonable of me to bristle at the thought of a ‘citizens’ jury’ taking on the evaluation of this topic? In the era of widespread anti-vax beliefs, a culture where voting in a GE is treated with the same seriousness as choosing who wins the X Factor? I only want the highly educated and rational to be making these decisions.
Excellent essay here and helpful. I think people in general have difficulty dealing with complex matters they want to see things in black and white terms, hence the strident camps supporting one DMT as the cure all for everyone. It seems like there is a large grey zone in terms of pwMS that were active and then successfully treated with Ocrevus. Potentially this treatment could backfire and it seems like we just do not have enough info on that.
I think patients should have equal control with Healthcare Providers. I believe that HSCT is more effective and cheaper for people with MS. I agree with msintheus that with the limitations of Ocrelizumab regarding vaccine antibodies, HSCT needs to be much more readily available both here in the UK and across the globe. HSCT has evolved and should now be considered a frontline treatment. Prof G, thanks for raising this important topic and also for admitting last week on twitter that your previous knowledge about HSCT abroad was out of date. This is so very rare for a Consultant to admit this. Thankyou from the bottom of my heart.
Given the new - very serious risks of being on Ocrelizumab (no response to covid jab, covid increases mortality) I think AHSCT should be standard offer for a lot more people now. The global dynamics and risks/benefits have changed substantially and treatment guidelines should adapt accordingly.
I relapsed quite quickly after hsct. It was my first ms treatment after diagnosis. I have no regrets at all, although I do wonder where I will go from here. On paper I was the perfect candidate as per Dr Burts trial findings and the NHS criteria, I feel it is unfair this treatment locally is withheld from pw secondary progressive/ more advanced MS. Of the cohort who started treatment with me , I am the only one to have relapsed, the others are stable and some are thriving with much better quality of life.
I would have AHSCT tomorrow, if I could. I am 44, a qualified Podiatrist and PhD Researcher. I want to work, I want a body that will allow me to do the things I used to. If AHSCT will reboot me… sign me up! My brain, brain stem and spine took a good frying before I was diagnosed and more lesions appeared after I started Ocrevus. I know it’s supposed to be “the wonder drug”; however, for me, I don’t feel any better. Yes, the last MRI showed NDA, my body disagrees. If anyone would like an AHSCT guinea pig or muse… 🙋🏼♀️🙋🏼♀️
Might not be the right place to ask for this, but it was mentioned in the article so I'll give it a shot: are there any news on the state of the direct comparison trial Ocrevus/Lemtrada Vs AHSCT? The StarMS website doesn't have any updates on that (reckon the whole pandemic thing has influenced things)...
It’s good to read this, Gavin, and crucial that you’re continuing this conversation.
I do agree with your ethos that healthcare is a basic human right and that it should be free at the point of access, but I don’t think that’s a good enough reason for people not to go overseas when they have no other choice.
At AIMS we’re very aware of patients who have been unsuccessful in being accepted for HSCT on the NHS - but then told they can have it privately in the U.K. for £80k! Is it any wonder that they choose to go overseas for half the price? I know of one lady who could have afforded the private U.K. price tag, but went elsewhere on principle - if she was ‘unsuitable’ for HSCT on the NHS, then where were those principles when it came to getting it privately?
I’d argue that it isn’t social conscience that makes so many practitioners advocate against their patients going overseas - it’s a basic lack of knowledge about what’s being provided there. You yourself told how U.K. practitioners talk of ‘HSCT light’ in Mexico, and how ‘patients need to have follow up Rituximab for 2 years after they return home’ - neither of these things were accurate, and you had the good grace to correct them. I think many of those same practitioners would be surprised to know that the very doctor who they are belittling is a fellow of the Royal College of Physicians - are they?
Sadly you’re in the minority in that you’re happy to correct yourself when you get it wrong, and we need to re-educate practitioners about what’s actually on offer overseas. And of course that includes any risks as well as the benefits.
As far a a Citizens’ Jury is concerned, AIMS would love to be involved in your getting this off the ground - you’ve been talking about this for a long time now. So how about it? Can we work together on this? Can you email me at alison@aimscharity.org to discuss this further, Gavin? We have other plans that I’d like your input on too, if you have the time and the inclination!
Careful, GG, you're beginning to sound a little like an HSCT zealot, yourself! 😊 That's a good thing! I assume that by "zealot" you mean someone who is in favour of HSCT as a primary treatment for MS and doesn't mind saying so. That includes most of the thousands of pwMS who have actually had HSCT, as far as I can see.
By the way, before I went abroad at great expense for my HSCT in 2014, I consulted a local consultant haematologist and he would have been delighted to treat me here in Oxford, but was prevented from doing so by my intransigent neurologist. So that confirms your premise about where the stumbling block is in moving forward with access to HSCT in the UK. Until that access happens I'm afraid that pwMS will continue to go abroad for HSCT, and will continue to be helped by those you call zealots.
As a PWms of 30 years since diagnosis I would have jumped at the chance of any treatment, especially a potential cure. I fully understand that I am now excluded, on many levels, too late for the likes of me. It would reduce the need to find anything, anything that may help. CCSVI comes to mind for me and many others like me. You are driven into the arms of people offering unsubstantiated treatments. It’s amazing what desparation drives one too. So yes let PWms decide if they willing to take the risk on AHSCT. Life is a risk full stop. MS is like childbirth, in that it gives you the need to be courageous .
Nice that you are talking about this,and next thursday 23/9/2021 its Autoimmune Diseases Working Party (ADWP)
And its free for all people
Here´s the program
https://www.ebmt.org/sites/default/files/document-center/ADWP%202021_Preliminary%20Programme_web14_0.pdf
Prof, by the time HSCT becomes available first line, would you not expect a note promising drug to be coming closely behind it that is more targeted than the HSCT carpet bomb? You have talked previously about the differences between Alemtuzumab and HSCT. This would be an interesting newsletter article as their efficacy is considered on par yet the modes of action and therefore risk are very different
Yes healthcare should be free at point of contact and in an ideal world people wouldn't be forced to go for a procedure abroad; but the bottom line is we are being forced into this position. So many people in the UK are told that they aren't suitable because they are spms, ppms, no active lesions ect, it won't help them, and then go abroad and have it done and it's a successfully. Without a doubt Mexico and Russia for example are providing exemplary care and have much more experience in hsct for auto immune than we have in the UK. Many neurologists in this country are still misinformed and give out incorrect information to their patients, such as it's a new, experimental treatment with a high death rate ( I was told this 2 years ago and I attend a hospital that performs hsct!). I follow your blog very closely and I wish more neuros were open to discussion on the topic as yourself
Thanks for Clarifying. Ideally the treatment would be made available in the UK to wider range of MS sufferers. However, if it’s proven to be affective abroad, but the NHS don’t offer AHSCT to patients at a certain stage, I back a person going abroad to get the treatment, if they can finance it. To my mind and at that stage, going abroad for treatment should not be frowned upon and the patient shouldn’t be left concerned about the amount and type of support he or she will get, when they return.
Yes, as some one who had HSCT abroad, over 2 ½ years ago it should be available much sooner but I don’t agree with the criteria to qualify. I have been in remission from RRMS since my treatment. It used up a substantial amount from my husband’s pension fund and will now have saved the NHS money. I was diagnosed with CI in 2008 and formally with MS at the beginning of 2010. The first DMT was probably no better than placebo and in 2013 I relapsed leaving me having to be pushed in a wheelchair for 5 months; I say pushed because my left arm was also weak and fatigued very quickly. With the help of my MS nurse I had to fight against my neurologist to prove that I qualified for Tysabri. Under a different neurologist I was persuaded to come off Tysabri (and went onto Gilenya) after 2 years because of my PML risk. I relapsed and that’s when I started with problems with my right arm. I have an EDSS of 3 but still have significant problems with fatigue, dizziness, cognitive difficulties and my right arm and right leg in cold damp weather so obviously I wish that I’d been able to have a more effective treatment (that I hadn’t been persuaded to stop) much sooner. I went back on Tysabri but after another 2 years the neurologist once again scared the hell out of me over my high risk of a PML infection. I believe that a high risk of PML should be counted as a reason for HSCT (not just failure on an effective DMT). I had an episode at this time that I believe was a relapse anyway but my neurologist argued that it wasn’t (saying that there were no new lesions on my scan, which didn’t use Gadolinium). I was offered Lemtrada but when I saw a well respected neurologist privately he advised me not to take Lemtrada. I was not advised to avoid going abroad for treatment but was told that despite him seeing one new lesion on the MRI scan of my spine I did not qualify for treatment under the NHS. Unfortunately like many people the previous MRI scan of my spine had been carried out 2 years before (so even if there had been an active lesion or 2 new ones I still would not have qualified.)
Is it unreasonable of me to bristle at the thought of a ‘citizens’ jury’ taking on the evaluation of this topic? In the era of widespread anti-vax beliefs, a culture where voting in a GE is treated with the same seriousness as choosing who wins the X Factor? I only want the highly educated and rational to be making these decisions.
Excellent essay here and helpful. I think people in general have difficulty dealing with complex matters they want to see things in black and white terms, hence the strident camps supporting one DMT as the cure all for everyone. It seems like there is a large grey zone in terms of pwMS that were active and then successfully treated with Ocrevus. Potentially this treatment could backfire and it seems like we just do not have enough info on that.