Tag: research

96 MS and HSCT online

Well it’s a week into the school holidays and I’m finally starting to unwind a little.  I have decided not to book a holiday or even a trip to the IoM and to just stay home, relax, see friends and get a few jobs done.  

My garden is small and I usually manage it myself, but the recent warm weather combined with heavy rain fall, means that everything has grown madly over the last few weeks and it’s is now a bit beyond me!  

I am still anxiously awaiting news from the hospital in Sheffield.  I am expecting an appointment in “mid-August” but haven’t been informed of one yet.  It’s very hard to plan anything at all, as I want to make sure I’m available for the appointment. 

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I am one of those people who needs to learn as much as I can about things that affect me, so have been reading and researching all things Multiple Sclerosis since before I was formally diagnosed. It was through doing this that I came across a BBC news report on the MS MIST (HSCT) trial, leading to further research on whether it could be the treatment for me and how I could access it.  

In case anyone else is starting this journey or for anyone who is interested, here are some of the sources of information and support I have used.  

MS Society

In the UK, there are several organisations providing information and support for those with MS, their families and friends.  Perhaps the most well known of these is the MS Society.  The MS Society provides information via their website, has local support groups all over the country, funds research and campaigns on behalf of MSers.  The MS Societies in various countries are all linked and receive some of their funding from major drug companies.  The information they provide about MS is likely to be very reliable, however, there is concern amongst some MSers that that the Societies may be influenced by their pharmaceutical backers and that people with MS may not always be their first priority.  Certainly, it is very evident that the MS Societies do not promote HSCT and some of the information they provide on this is both inaccurate and overly negative. 

MS Trust

The MS Trust is another large UK organisation providing information and support for those impacted by MS.  The information on their website is reliable and easy to understand and I have also found their telephone helpline to be useful.

MS-UK

MS UK is a slightly smaller UK organisation, with a useful website and helpline. 

Shift.ms

Shift MS is a patient driven world wide organisation providing an online community of fellow MSers, where all aspects of the disease, treatments and everyday life are discussed. 

All of the above have social media presence on Twitter, Facebook and elsewhere and provide news and commentary on new developments in managing MS, living with disability, entitlement to benefits etc. 

When researching HSCT, it is not easy to find reliable information and patient experience.  The most reliable and supportive resource for me has been the Facebook groups, which are run by HSCT patients.

There is a general world wide HSCT group … HSCT Hematopoietic Stem Cell Transplant – MS & Autoimmune Diseases (Facebook group)

And a very helpful UK group – UK HSCT for MS and Autoimmune Diseases (Facebook group) – where UK citizens can get advice and chat with others about accessing treatment here or abroad.  There are further groups for the clinics in Russia and Mexico (as well as some others).  

AIMS (Autoimmune and Multiple Sclerosis)

There is also a new UK charity, the world’s first that supports people with MS and other autoimmune diseases to access HSCT.  The charity was set up by some HSCT patients and their partners and had its official launch last year.  They are mainly operating via their Facebook and Twitter pages at the moment and have recently launched their first invitation to those pursuing HSCT to apply for financial support with travel expenses.  

These have not been my only sources of information … I have also read numerous research reports and neurology opinion pieces, which have all helped me to feel confident in my decision to pursue HSCT.

A couple of my fellow HSCT UK Facebook group members have recently had their stories reported in the national media.

Colette and Lucy were both successfully treated by the team in Sheffield. You can read more about their stories here … Colette and Lucy.

77 The time is now

Before making the decision to pursue HSCT, I spent a lot of time reading and researching MS and available treatments so that I felt able to make an informed decision about how I wished to take on the disease.  Others have engaged in this research and reached a different decision about what is best for them.  I very much believe that it is important that patients are involved in the decision making in relation to their treatment and care.

Whilst learning about MS, I came across a blog written by two eminent neurologists from St Bartholomew’s Hospital in London (known as Barts). 

They discuss various aspects of MS treatment and research and often initiate a lot of online discussion, both in the comments section of the blog and elsewhere.  Until recently, the blog authors were very cautious about advocating for HSCT as a possible first line treatment option, but there has been a noticeable shift in their thinking, particularly since the publication of the recent MIST trial outcomes.

Effect of Nonmyeloablative Hematopoietic Stem Cell Transplantation vs Continued Disease-Modifying Therapy on Disease Progression in Patients With Relapsing-Remitting Multiple Sclerosis January 15, 2019

This week, during a discussion on one of the blog posts, this response appeared …

A huge buzz went around the MS/HSCT world …here was a world renowned MS expert preferring HSCT, not as an eventual possible treatment, but as a first line treatment …hallelujah!!

A few days later, Professor Gavin Giovannoni (or Prof G, as he likes to be known) returned with a full explanation of his change of heart.   Here are a few highlights from that post …

When asked on the blog yesterday which DMT would I choose if I had MS, I chose HSCT. One of my patients, who I have been looking after for over a decade, sent me an email stating how upset she was that I had never offered her HSCT. I clearly need to explain my position so as not to upset anyone else.

Firstly, HSCT is not on offer as a routine NHS therapy. At the moment HSCT is only considered as a 2nd or 3rd-line treatment in the most active patients. Another problem is that it is not on offer across the country. There are only a handful of MS centres that are prepared to refer their patients for HSCT. This means that access to HSCT is not equitable and explains why an increasing number of patients are having to travel abroad, at great personal cost, to receive this therapy. Inequity of care is against one of the founding principles of the NHS and is unacceptable.

The block in access to HSCT seems to be at the level of the neurologist/MSologist. […]

Another factor that has changed in the last 10 years is the strength of the evidence-base showing how effective HSCT really is as a treatment for MS. The most recent MIST trial, the first large randomised controlled trial, and several meta-analyses of HSCT, which have been extensively discussed on this blog, have confirmed that HSCT is a very effective therapy. […] […]

Please be aware that HSCT is not for the faint-hearted. It is a risky therapy with serious adverse events and quite a high mortality. Even a mortality rate of 0.3-0.5% is high when compared to other licensed DMTs. Should this stop us from offering HSCT first-line? I think not. If we are prepared to offer alemtuzumab, with its risk profile as a first-line treatment, why not HSCT? Most pwMS would agree that the decision regarding what is an acceptable risk to take should be taken by the patient and their families, and not the neurologist or other HCP. There is data showing that neurologists are much more risk-averse than pwMS. Neurologists need to acknowledge this bias, which is likely to be an unconscious bias, and let their patients make the decision. […]

Although Prof G shows some understanding of why many patients (like me) choose to travel abroad for HSCT, he later expresses his disapproval of that situation, as he feels that clinics in other countries will agree to treat all patients who are willing to pay, whether they are likely to benefit or not.  Evidence from those clinics is that most pwMS are likely to benefit from HSCT in terms of halting the disease and many will experience improved symptoms.  Patients for whom treatment may be dangerous are not treated at these clinics (people with severely impaired mobility or with concerning additional medical problems for example).

The full post and interesting subsequent discussion can be found here …

https://multiple-sclerosis-research.org/2019/03/1st-line-hsct/

Slowly but surely, HSCT is becoming a mainstream area of discussion in the MS community.  Many believe that it will become much more available as an NHS treatment option within the next few years.  This leaves me and my fellow MSers with a difficult dilemma … I could wait and keep fighting the system, in the hope that I can one day access HSCT here.  My big worry about doing that is that I don’t know whether I have time to wait.  What if my MS progresses or I have a big relapse and become more disabled?  What if my general health deteriorates as I get older, making treatment more risky?  In addition, there is some evidence that HSCT is most likely to effective if given in the first few years after diagnosis and when the patient hasn’t already damaged their immune system by trying a series of conventional DMTs.

The more I read, the more certain I am that I am doing the right thing!  I am fully aware of the risks involved in HSCT and of the long road to recovery, but I’m prepared to travel that road and the alternative – waiting to become sicker – is no longer worth considering.

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