#GuestPost & #NewsSpeak: feedback from the MS-Chariot meeting

An MSer’s perspective the MS-Chariot meeting. #GuestPost #ThinkHand #MSChariot

Last week, I attended the first MS Chariot meeting at St Barts. Around the table were about twenty of us – mostly neurologists from the UK and abroad, health researchers, an MS Society  representative and a few of us MSers – all there to discuss the possibilities, funding, treatments and yes – frustrations – of those with advanced MS who have traditionally been overlooked in the quest for disease modifying drugs.

This was made all the more apparent at the start of the day when Craig Milverton sat down at a piano and began playing a handful of songs by George Gershwin, Cole Porter and other jazz greats.

Playing is the key word here.

You see in 2010, the very year Milverton was named Jazz Pianist of the Year, he was diagnosed with PPMS. With each passing month, his symptoms got worse. His walking deteriorated, his fingers became more and more numb and he began missing notes on the piano. His career as a pianist was over, he thought.

Then in 2012 he was able to get on ocrelizumab – an experimental drug currently being assessed for drug licensing by the EMA for RRMS and PPMS. Almost immediately after his first infusion he started to feel better. Since then, his symptoms have stabilised and he has been able to continue playing across the country.

Craig is one of the lucky ones. Until very recently, it was thought that a person with advanced  MS – with an EDSS score above 5.5 and requiring a walking aid – would not benefit from a disease modifying treatment (DMT). It was not quite “Diagnosis and Adios,” but pretty close.

Why? Selective interpretation of trial data, too much focus on EDSS scores as a key outcome, a belief immunotherapy did not work “beyond the wheelchair,” regulatory process, cost and numbers. Advanced MS is uncommon. Only 10-15% of MSers are initially diagnosed with it.

Such a belief also meant that for those with advanced MS preserving upper limb function was not seen as a priority. But if you think about it, what keeps pwMS independent is their arms and hands. When you lose the ability to walk – that is bad enough. But at least with your hands, you are able to get into your wheelchair, dress yourself, clean your teeth, feed yourself, make a telephone call, use a keyboard, self-catheterize, work a remote control… Lose that and your quality of life plummets.

Thankfully this mindset is starting to change. “At the moment, there are no established options for advanced MS, but emerging therapies are offering hope,” said Cris Constantinescu, a neurologist from Nottingham University, to the group.

For Dr. Klaus Schmierer, a neurologist at St Barts who organised the forum, real promise lies in cladribine, a drug traditionally used for the past 25 years to treat hairy cell leukemia, but which has also proved to be highly effective in treating RRMS. As an MS drug, it has many advantages. It is safe, easy to use, convenient – it is an injectable but also comes in tablet form –  and cheap as it is a generic drug.

Intriguingly, there is also evidence, dating from the early 1990’s, that cladribine may also slow advanced MS. At the moment, about one hundred patients at the Royal London Hospital with advanced MS – who have failed other therapies – are using it and finding it effective. “It meets the needs of some patients for whom we have little to offer,” says Schmierer. But definitive trials are lacking, a source of frustration for Schmierer, who is currently looking for funding.

Another MS drug which offers hope is rituximab, an injectable, which works in a similar fashion to ocrelizumab.  Though the NHS has declined to fund rituximab for the treatment of MS in the UK – citing insufficient trial results – Swedish neurologists have been using the drug for RRMS and advanced MS for more than a decade. “It fulfilled an unmet need and there were fewer options available for advanced MS,” said Frederik Piehl, a neurologist from the Karolinska Institute. In Sweden, he said rituximab has been found to have been highly effective and well tolerated. However in the UK, neurologists are not allowed to prescribe it for their patients.

By the end of the day, it had become apparent that there were no one-off easy answers regarding treatment options for those with advanced MS. The challenging nature of treating MS, plus wrangles over drug licensing, potential funding and drug company priorities ensures this However there was a feeling that, at least, attention is finally being focused on those with advanced MS who might have been previously ignored. Studies have shown – and as Craig Milverton apply demonstrated – advanced MS is modifiable. Now it is key to get the rest of the community on board.

As Aisling McMahon, head of clinical research at the MS Society, said: “We are very aware that progressive MS is the greatest area of unmet need.”


19 thoughts on “#GuestPost & #NewsSpeak: feedback from the MS-Chariot meeting”

  1. Inspiring and well-written post. Sounds like a very successful meeting. Fantastic idea to involve Craig in #ThinkHand perfect illustration! Thanks, as ever, to you all for all your hard work and in particular this fantastic initiative. Will the MS Society provide some funding for Chariot?

  2. Correct me if I am wrong, but from the description it doesn't sound like Mr. Milverton had an EDSS score over 5.5 when he was given ocrelizumab, or was at the very least not using a wheelchair. So how does this qualify him as having "Advanced MS"?I appreciate this written account, and it sounds like the conference was exceptional, but unless I'm missing any pertinent details, it would appear that Mr. Milverton would fit quite nicely into the "likely responders" group of PPMSer's in regards to ocrelizumab. Younger, less disabled, recently diagnosed.I know that Dr. G doesn't like breaking the PPMS group into responders and nonresponders, but I would honestly love to see some hard evidence that ocrelizumab or any other immune based therapy actually alters the disease course in wheelchair confined patients, other than the interferon study cited in a previous post.Of course, if the therapeutic lag theory is correct, it would be difficult to come up with such evidence since very few advanced MSers have been on any therapy long enough to demonstrate efficacy.What are the prospects for Cladribine altering the course of progressive disease? Or, for that matter, any of the non-pulsed therapies, including HSCT? I did notice that the British guidelines for HSCT cited positive gadolinium enhancing lesions as the only inclusion criteria for patients with PPMS.Thoughts on this?

    1. Spot on Mrs Milverton is an Ambassador for Roche Like Jamie Lynn sigler is for Gennetech (Tony Soprano Daughter, boss of the mafia)https://www.reimaginemyself.com/en_us/home/ambassadors/jamie-lynn-sigler.htmlLike George clooney is for NespressoWe are like fish is a barrel for Bigpharma

    2. Good causes for us msers yes (listen to is talent on the piano)Good cause for Bigpharma sure % increase in Dmd sales

  3. More and more, when I visit this blog, I have the feeling that someone is trying to sell me something. If I swallowed it all unthinkingly, I would no longer trust my medical team, nor my common sense.

    1. Visiting this blog isn't compulsory, there are many other out there that you might prefer. No-one here is trying to sell you anything, just giving information with the added bonus of an honest interpretation of that information, as we see it.If you prefer vanilla, there are many sites out there with just such a flavour.

    2. Yes, MD2, I do visit other sites, e.g. MS Trust, but wouldn't patronise them with the description of "vanilla". I just don't like rather one-sided writing on medical issues essentially purporting to be the truth, with not even a nod toward other possibilities.

    3. "I just don't like rather one-sided writing on medical issues essentially purporting to be the truth, with not even a nod toward other possibilities."You say one-sided, I say it's an honest opinion based on experience and the available evidence. let's call the whole thing off! 😉

  4. Cladribine is described simply as "safe". Like a cup of tea? Hardly, I think. This is not balanced, honest writing. This article reads like an advert.

    1. It is an advertisement say we want to do studies in advanced MS.Yes we need everybody's support to make this happen. If pharma come to the table fine, if not we need every penny we can get becuase without it, nothing happens

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