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StarMS - Where Are All the Patients? By Alison Coates

I’m feeling frustrated and personally disheartened with the neurologists of the U.K. today. And I’m angry. I’m really angry.

The StarMS trial is up and running - with just 20 patients randomised to date. This isn’t a secret - it’s clearly shown in the StarMS Newsletter.

The target number for this trial was 198. That should have been a breeze to recruit, considering there are 130,000+ people with MS in the U.K. and a further 7,000 new diagnoses annually, right?

If we argue that only 5% of the current MS population is suitable for this treatment (we know it’s considerably more than that) then there should be a pool of over 6,000 patients who could be put forward.

Moreover, there are approx 130 newly diagnosed patients EVERY SINGLE WEEK. Basil Sharrack, leading on the trial, surmised yesterday that maybe 10% of newly diagnosed patients would be suitable candidates - that would be 13 patients every week.

The trial has been going for 8 months now. That’s 468 potentially suitable newly diagnosed patients - so where are they all?

I’ll tell you where they are, because we’re seeing it at AIMS, Scottish HSCT Network, and UK HSCT for MS & Autoimmune Diseases every single day; they’re being blocked by their neurologists. Patients are being told that they should start with a lower efficacy drug - or even a high efficacy drug, but not HSCT.

We’re hearing stories of patients who are being told that if they push for HSCT their neuro will no longer treat them - and this isn’t patients who are opting to have HSCT overseas, it’s patients who want to be put forward for STAR-MS! In the U.K. On the NHS.

Gavin Giovannoni is a neurologist I admire greatly for so many reasons - he has spoken (at length) about neurologists’ failure to refer, as well as the current practice of medical gaslighting.

I believe Scottish neurologists to be the worst culprits. I consider it a National scandal that not one single Scottish patient has got HSCT on the NHS since the SHTG published their guidance in 2019. Furthermore, as the key hospital for Scotland taking part in the StarMS trials, Edinburgh has still to randomise a single patient. Are we really to believe that a single suitable Scottish patient has yet to cross the threshold of a neurologist’s office? Or is it more likely that this is a systemic failure and the the Scottish Neurology profession is terrified to stick its head above the parapet? A question I’ll be asking David Hunt next month…

Something has GOT to change. We need to somehow infiltrate the neurology departments of every single hospital in the country to ensure that they start listening to us. We need patient power now.

If this trial fails, it will a scandal of epic proportions- and it will be the neurologists of this country who will have blood on their hands.

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