James Received HSCT for Free, as He Lives in the UK
Virtually all the talk about availability of HSCT1 as an MS treatment includes the need to travel long distances to other countries, but U.K. residents can receive the treatment in London, avoiding the journey overseas. What’s more, it is provided through the country’s social National Health Service (NHS) so, like all NHS medical care, patients are given HSCT free of charge.2
Yes, you read that right, while treatment costs worldwide seem to vary between $50,000 and $120,000, not counting travel and other incidental expenses, U.K. residents can get the therapy free.
James Coates has just undergone non-myeloablative HSCT (the protocol that uses lower-dose chemotherapy drugs) at King’s College Hospital, in London. In fact, today (Wednesday) he reaches 44 days since he received his stem cell transplant.
I was fortunate to be able to contact James, who lives in England’s north-west, to ask about his experiences and how he is getting along.
James Coates.
IF: We hear different doctors disagreeing about HSCT. Some say it only works with Relapsing MS, others disagree. What type of MS to you have?
JC: Secondary Progressive with an EDSS score of 6.0 to 6.5.
IF: How long did it take from applying to receiving treatment?
JC: After a disappointing start, it was quite quick. All applications have to be considered by a panel which, first of all, in December, turned me down as not meeting the criteria. But I appealed with the support of my neurologist and new MRI evidence. At the next panel meeting at the end of January, my application was accepted. Then, just 15 weeks later, I was in King’s where my treatment was led by consultant hematologist Dr. Majid Kazmi.
IF: I realize that it’s early days yet, but how are you getting along so far?
JC: As you say, it’s early yet. But my brain fog has improved and I can think more clearly and understand things more quickly. My constipation is not so bad and, before, when I would lie on the bed I could not move my right leg, as though it was dead; now I can lift it right up.
Delighted to have been given HSCT free
IF: I know that the first three months are in ‘recovery’ mode and you cannot do any serious exercising yet, but are you happy with having been given HSCT free and your progress since?
JC: Happy? More than happy, I’d say delighted with both. And the progress is not just me. I had my first follow-up last week and Dr. Kazmi was really pleased that I am, in his words, “ahead of the curve” and doing better than he thought I would. He was surprised and pleased that I have also started to drive again, something I had not done for months. My EDSS score is about the same but it’s too early to expect anything else yet.
IF: What are your hopes and expectations about the final outcome of this treatment?
JC: I am realistic about this. Stopping the MS getting worse, halting its progression is my primary goal. Anything better than that would be a great bonus. Of course, I am hopeful of that but stopping it is my main goal.
IF: What’s next for you?
JC: Dr. Kazmi, who is so caring, wants to see me again in another month. Then, once three months has passed, I can start some serious exercising.
IF: Finally, James, what do you think of how you were treated by the team at King’s?
JC: It was absolutely phenomenal. Not just Dr. Kazmi but the whole team. I cannot speak highly enough about them all.
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1 Hematopoietic Stem Cell Transplant.
2 Access to NHS services is based on clinical need, not an individual’s ability to pay. NHS services are free of charge, with certain exceptions approved by Parliament.
Comments
Adrian Sohn
I live in Canada and it would be covered ( not "free", all the taxpayers collectively pay for it)
I applied to get it done 2 years ago and they said that since I'd had ms for 20 years and it was secondary progressive ms they would not do this treatment on me
Perhaps in time it would be covered for people who had ms for 2 years or 5 or 10 years but for now its only covered for people in their first year of MS
Hi Adrian, I am not familiar with the health system in Canada but the UK system is funded by the government from contributions made by working people and employers through National Insurance and other sources. Those don't change whether or not you use the medical services on offer. One of the fundamentals of the NHS is that there is no charge to UK residents for its services at the point of delivery.
Philip Longford
This is what we have been waiting for. I will try to get my new consultant, to put me forward. Should put the fly-by-night con artists out of business (or, rather, move on to their next scam!)
Jim Wilson
Ian, do you know what the admission criteria are for HSCT treatment at Kings? I'm RRMS transitioning to SPMS but at 61 I suspect I'm too old for the treatment.
Hi Jim, according to what I have seen, the upper age limit is 65.
Alison Coates
Please see the NHS criteria for HSCT for MS here: http://multiple-sclerosis-research.blogspot.com/2016/01/london-ms-ahsct-collaborative-group.html?m=1
Judy
Congratulations, James! Do you know what the age limit is for HSCT?
Yes, it's 65.
Fizzyfuzzy
Are they not part of a trial? Hence why charges being covered. I am in the UK and have heard a one or two people getting this but really not many at all.
Hi, no, this is NOT part of a trial. This is the NHS providing HSCT as part of its standard care on its usual basis - and that means at no charge to patients who live in the UK. Not everyone can be accepted, that is why they have criteria and a panel to assess each case. Anyone who qualifies and would like to apply for the treatment needs to be referred by his or her neurologist.
Alison Coates
No, it's not a trial at King's or Hamnersmith, only in Sheffield. Around 50 patients have been treated in the UK to date and most of them were RRMS.
Courtney
Do you know the price if you don't live in the U.K?
Philip Longford
After months of delays, I am now booked in to see my new (and highly regarded) neurologist. This is going to be high on my list of questions!! Although a significant amount of the requirements, are in goobledigook, the ones I can understand, age, ability to walk, not wheelchair dependant. (basically, not being Past It!), I should be ok with.
When my first consultant, as I was diagnosed, rubbished the idea of any kind of stem cell treatment, I felt that this had to be the way forward. Obviously needs the chemo, and that is being fine tuned all the time. But, OMG, what happens to my Blue Badge, if they cure me!! I will no longer be able to park like a complete prat! (One of the perks of MS.)