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 …
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.
