This is my rant. Buckle yourselves in.
So, as many of you will know, I have recently been diagnosed with Primary Progressive Multiple Sclerosis. This is the type of multiple sclerosis that only 15% of sufferers have and for which, on the NHS, there is little or no treatment. What I’m about to say might play merry havoc with people’s psychology is because, after all, people are funny things. They make decisions and stick with them through thick and thin irrespective of what evidence or what other people might say. I fully expect some pushback to what I say and I certainly don’t want to sound like some kind of evangelical. I’m just trying to explain why I made the decisions I did and why I am deeply frustrated at the health care systems all around the world who do not support this treatment, or who appear to finally be coming on board.
First of all, what is HCST (Haematopoietic stem cell transplantation)? You can find out far more details and I’m going to give you here. In synopsis, they harvest the good, pristine cells in your body known as stem cells that are produced in your bone marrow. They do this in a far less invasive way than they used to 20 years ago – it is now rather non-myeloablative chemotherapy than ablative chemotherapy. This means that they don’t completely destroy all the cells that you need to operate functionally but, hopefully, the ones that really matter - the immune cells - and maybe 15% of the others just for good cause. This means that the risks are far fewer for chemotherapy than they used to be. Half the problem is that neurologists and experts seem to look at the stats that are 20-years old when they were performing this far more difficult procedure, rather than newer ones. After the chemotherapy, they reinject the stem cells that they have frozen for four days back into your system. As your chemotherapy kills off your immune system and over the next week or so, your stem cells kick in to bring your immune system back to life. Happy days. Vast amounts of pretests are now done to ensure that those with risk factors are sent home without giving them the procedure. This has greatly reduced mortality and infection rates.
BENEFITS OF HSCT
A) HALTING AND REGRESSING
So let’s start looking at the advantages of doing HSCT. This is the real no-brainer of the situation because HSCT provides the best course for halting progression, for bringing about regression of symptoms and for having the fewest side-effects. The drugs (DMDs [Disease Modifying Drugs] for people with Relapsing Remitting MS) have myriad side-effects that can leave you in all sorts of problems. Whilst there are risk factors involved with any kind of serious operation involving stem cells and chemotherapy, these are mitigated by fantastic procedures in the decent clinics that provide it. So, halting and moving your EDSS (disability score) level back down is the name of the game without the debilitating effects of the DMDs.
B) SUCCESS RATES
For example, I am led to believe that lemtrada has an excellent success rates in the first year (with side-effects), nearing 100%, but that it trails off to 18% in the fourth year so that relapses are exceptionally common. On the other hand, HSCT offers something above 85% right across all four years (I am giving figures of all types of MS sufferers and journeys here). Success rates for RRMS [Relapsing Remitting] patients are 90 to 95% successful and for PPMS patients are a little less. Obviously, there are mitigating factors that will play into the success rates such as coming into the treatment with very high EDSS scores after arriving after a long journey through MS, being young, older, cognitively more impaired or not. Being on DMDs for a very long time can also affect success rates, which is why you need long washout periods to get these drugs out of your system. Now confusion over what DMDs to take can be quite a headache and the side effects can be so debilitating that these courses of action are problematic in their own rights.
Results Among 110 randomized patients (73 [66%] women; mean age, 36 [SD, 8.6] years), 103 remained in the trial, with 98 evaluated at 1 year and 23 evaluated yearly for 5 years (median follow-up, 2 years; mean, 2.8 years). Disease progression occurred in 3 patients in the HSCT group and 34 patients in the DMT group. Median time to progression could not be calculated in the HSCT group because of too few events; it was 24 months (interquartile range, 18-48 months) in the DMT group (hazard ratio, 0.07; 95% CI, 0.02-0.24; P < .001). During the first year, mean EDSS scores decreased (improved) from 3.38 to 2.36 in the HSCT group and increased (worsened) from 3.31 to 3.98 in the DMT group (between-group mean difference, −1.7; 95% CI, −2.03 to −1.29; P < .001). There were no deaths and no patients who received HSCT developed nonhematopoietic grade 4 toxicities (such as myocardial infarction, sepsis, or other disabling or potential life-threatening events).
C) DMDs
The key point to take away here is that DMDs are merely sticking plasters that seem to treat the symptoms or try to slow down progression at best. On the other hand, HSCT looks to tackle the root cause. Well, the root cause is gene deficiency and we are not likely to be up to deal with that just yet. However, the next best thing is the mechanism by which the inflammation and autoimmunity hit the body. This is what HSCT tackles. I will talk about this a little bit in the barriers to HSCT section. In conclusion, the science really is in for HSCT being the best course of action. I believe Dr Burt, over in Chicago, is just about to produce some pretty stellar research to confirm this.
D) PROVISION IS SIMPLY BETTER
For my pretests in Russia, I received MRIs at a scanner that was twice as powerful as the one I had in the UK and they found 11 lesions instead of three with some on my spinal cord out were slightly more worrying than I had been led to believe. More on this later. I am a big fan of the NHS, of course, but they are just lagging behind here in terms of the best provision in the world. The good news, is that they are trialling more and more these of treatments throughout the country. I believe new outlets in 18 hospitals are trialling HSCT against lembrada in the coming months. What is frustrating is that HSCT is something that is given to so many other diseases but is somehow forgotten to be applied to many of the autoimmune diseases. I’m led to believe that, from another doctor I spoke to recently, it is 100% successful for lupus, for example.
BARRIERS TO GETTING HSCT DONE
1) FOLLOW THE $$$
First things first, I would advise anyone who has Amazon Prime to watch the fantastic documentary Living Proof, by a Canadian documentary maker who exposes the massive influence of Big Pharma. More so in the States and Canada than in the UK, the big pharmaceutical companies pull the strings at the MS charities and with physicians and neurologists. They heavily fund them and dictate the remit against HSCT. This is because, if HSCT works, the drugs companies have no one to sell their drugs to. You simply don’t need drugs after successful HSCT treatment. There is a website called Open Payments that I think operate worldwide now that show how much money physicians and neurologists and experts get paid by the drugs companies. Here is a 2016 excerpt:
According to the Open Payments database, about 631,000 doctors in the U.S. received a total of $2.06 billion in payments from 1,479 pharma companies in 2016. It shows that the mean general payment for doctors in a category that includes neurologists — allopathic and osteopathic physicians in psychiatry and neurology — was about $8,400. (The mean general payment for all physicians in the database was just under $3,300.) But some are making a LOT more. Here’s an example of one neurologist who received a total of $424,690.70 from half a dozen pharmaceutical companies in 2016. According to the website, that doctor was paid an additional $600,000 in connection with research projects. (Screenshots via Open Payments.)
I was involved in a documentary that is being made in America whilst out here in Russia that hopes to expose many of these issues.
So when you see someone on the BBC breakfast News who has had successful HSCT treatment, and someone from the MS Society sits on the other side of the sofa and is extensively negative towards the treatment, that is because the drugs companies are pulling the funding strings at the MS Society and they are in turn telling the public what the Big Pharma want to know. Simply put, if HSCT was given successfully to everyone who had MS in the world, the big pharmaceutical companies would lose trillions of dollars. Period. This is primarily about money.
But don’t think this doesn’t happen in the UK as well. My friend was recently at a literary festival where a GP had written a book and where there were other GPs in the audience and one who stood up and admitted that some 25% of their salary came from outside sources.
2) KNOWLEDGE
This second part is partially my guess. I imagine, like many professionals, an average neurologist works really hard all day, goes home as a glass of wine with their partner, relaxes and gets on with life. Then they start the next day again doing what they do. How often do they get to peruse the latest journals or turn up to the latest conferences that concern themselves with particular disciplines within their whole department? For example, how much today did they research the latest in multiple sclerosis findings? My guess is not enough. There are so many cases that I know of where HSCT potential patients have gone to their neurologists to ask about this treatment and their neurologists haven’t got the first clue. As a result, the newly diagnosed patient is not getting the best information that they can. If you link this together with the fact that MS charities sideline the information for HSCT into the backwaters of their websites, then information is very difficult to come by. I cannot begin to emphasise the importance of the many Facebook groups that exist that disseminate wonderful information online. This is where Facebook has a truly great value to society.
3) HAEMATOLOGY VS NEUROLOGY
Here is an odd one. It turns out that HSCT falls under the discipline and Department of Haematology. And yet, when we get diagnosed with MS, we are sent to the GP and a neurologist. The neurological components of the disease are actually secondary to the haematological components where the white blood cells are the first things to attack your immune system. There is a good case to suggest that MS should fall under haematology first and neurology second but because there is no good integration between these two departments, things get lost and bad practices happen.
4) RUSSIA AND MEXICO VS REST OF WORLD
More and more places are taking on a chest CT around the world US, UK, India, Singapore, Thailand). I would not advise every place. And some scam operators exist where they just take out your stem cells and then reinject them without doing any chemotherapy. That is pointless and a waste of money. The two best places in the world are, without doubt, Russia and Mexico. Britain is catching up, but the infection and mortality rates lag behind the other two. This is primarily because the other two places have greater experience and they’ve been doing it for a lot longer. Indeed, the first patient from 20 years ago in Russia had an EDSS score of six and 20 years later remains with an EDSS score of one. We hear an awful lot of bias about Putin, but I am led to believe that he is trying to make Russia one of the best places in the world for health tourism. Seeing this place, I can quite believe it.
But the barriers here are the biases that people have towards Russia and Mexico. I had them. I thought why couldn’t I get it done in the UK where surely the healthcare system is better at home than in Russia where surely the hospital is falling apart. Well, I couldn’t be more wrong. The inpatient care I am receiving in Russia is second to none. The staff are amazingly efficient, dutiful and kind. The quality of the care is second to none and Dr Federenko’s team is quite simply superb. The machinery is better and the rooms and clinics are far, far cleaner. You are treated as a team member and your fellow patients are soon-to-be-family members. It is a wonderful experience.
I have given extensive video diary is to document all the experiences that I have had here and there have been really useful to those who have been looking to come out. Please check them out.
5) MONEY
As I always say, time is brain. I could have waited over a year to qualify for NHS provision in London, but the eligibility criteria are so strict I probably would have failed. This might have meant my deterioration could have got as bad as being wheelchair-bound and then any halting progression would put a halt to my progression at that stage rather than an earlier stage. For me, it has always been about doing the best thing as soon as possible. This is meant choosing Russia, as I think it is the best place for this, and fundraising like crazy in order to get this done. It cost me just under £40,000 and I was lucky enough to have enough fingers in enough pies to use to be able to get this money together in the requisite time (and I am also led to believe that the hospital makes little or no profit out of this provision). I do understand, however, that many other people are in very different situations to me and this might take a lot longer and be a lot more difficult. This is certainly a challenge but one with which there are many people to help, myself included. There is also a new HSCT charity called AIMS set out to help fund people to get to HSCT treatment centres. There is a dedicated HSCT fundraising page on Facebook to help with this.
I could furnish you with heaps of stats and journals research papers but really the science is in. This is a no-brainer. If you want the best treatment possible to halt and possibly regress your MS, then this is the treatment for you.
CONCLUSIONS
the obvious conclusion from me is that every single HSCT patient should be offered this treatment at the very first meeting they ever attend. The direction of treatment is sorely wrong and for a good many reasons. Basically, there needs to be much more dissemination of information freely available to all sufferers so that they can make out a really informed decision. This is certainly not the case at the moment. Many of the professionals have misinformation and out of date information that really doesn’t help matters at all. They are also compromised by financial and other implications. And I think that the MS charities can be doing a lot better job at informing people correctly of the procedures. This is not to slag those charities off because they do absolutely wonderful jobs for all aspects of MS support, just outside of the area of HSCT.
This is not a miracle, this is bloody good science. I am absolutely adamant that in 10 years’ time HSCT will be front and centre stage of all MS healthcare provision.
Now, to end this off, and going to talk a little bit about psychology. I know some of you will be in massively different scenarios to me. Younger, older, less physically able, more physically able, less mentally able, more physically able, attached to decisions they’ve already made that they don’t want to let go of and so on. If anyone wants to look into cognitive dissonance as a psychological phenomenon then you would do well to understand it here! I don’t want to annoy anyone here and sound evangelical because I’m not. I am a realist and a rationalist. I simply want what is best for everyone, and in this case, everyone includes all MS sufferers.
Now, I have PPMS [Primary Progressive Multiple Sclerosis] and the chances of this working from me are less than those with RRMS, but I’m damned if I haven’t made the right decision. However, I am realistic about this. It’s the best chance of the lot so I thought I had bloody better well have taken it. I’ve done that with no regrets. If it works, pat on the back, good decision – the Cosmos aligned in my favour. If it doesn’t, then I gave it my best shot. And, you can do it again, I believe. Who knows?
If you want to journal entries and scientific data to support the claims I’ve made, please do not hesitate to ask. I really hope this gives some idea of my journey – they whys and wherefores, and gives help and information to those seekers out there.
Time is brain.
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