Reflections on the ECF 2017

I have just returned from the European Charcot Foundation meeting in Baveno, Italy. The meeting is small (< 500 attendees) with no parallel sessions and ample time to mix with attendees and chew the cud. I did a plenary presentation on “dealing with increasing economic constraints”.  The feedback I received after my talk, and subsequently via email, has been extraordinary. An eminent neurologist said he was glad that someone was thinking about these issues and taking it on. I have also been contacted by a health economist and have been urged to write up the talk.

I started the talk by focusing on microeconomic factors around treating and managing individuals with MS. The arguments are well rehearsed; most of the costs of treating MS are linked to disability. Treat-early and effectively to prevent disability and you lower treatment costs. To achieve this I asked the audience to read and adopt the “Brain Health: Time Matters” policy initiative. I used the recent cost of MS study done by Gisela Kobelt to strengthen my arguments.

I then briefly mentioned how innovation in the design of healthcare systems and service delivery could also save money. Due to time constraints, I didn’t go into details; this is a talk in itself. In short, new ways of managing patients using digital and asynchronous tools will change the way we run our MS services. Not to forget the revolution in self-monitoring and self-management that is about to transform clinical practice.

In terms of the high costs of DMTs, the major disruptor would be the small molecule DMTs when they come off-patent. When I was a trainee medical registrar in South Africa, Simvastatin had just been launched and it triggered a national debate about whether or not the country could afford statins. South Africa has one of the highest rates of cardiovascular diseases in the world, particularly in the Afrikaaners. Please note since statins have come off patent and generics have arrived the price of Simvastatin has almost plummeted to zero.  When fingolimod, teriflunomide, and oral cladribine come off-patent it will have the same effect.

I then made the case for using off-label therapies that are cheap, or relatively cheap, to treat MS in resource-poor environments. I mentioned the trials and tribulations of trying to get support for this list from the two largest MS Societies. Both the societies were supportive in principle but for various reasons are unable to endorse ‘off-label prescribing’ in the DMT space. I mentioned that I have had support from the MSIF (MS International Federation) who represent MS Societies from across the globe. Interestingly, the large MS Societies are prepared to support compassionate use or low-cost access programmes in resource-poor countries. With this advice in hand, I did contact several Pharma companies and Tim McCormick from Biogen stepped up to the plate. However, because I don’t work on the ground in one of these countries it was difficult for me to stay engaged with this initiative. In short, I have handed the baton to the MSIF. However, the experience has taught me that making high-cost innovator drugs available to patients in resource-poor environments has many legal, political and logistical hurdles they are highlighted in the slides.

I then went on to discuss some low hanging fruit, i.e. unplanned hospital admissions. A good proportion of these admissions are preventable by running a responsive and proactive MS service and targeting high-risk subjects. The potential savings for the healthcare system is quite large. I did some back of envelope calculations to show that by investing in trained staff, i.e. MS clinical nurse specialists, that you can make savings. I used data from Barts Health NHS Trust Hospitals and the local boroughs.

I then moved onto high-cost drugs and showed how effective NICE is at keeping down costs for the NHS. The downside of this strategy is the parallel observation on the rising costs of DMTs in the USA. I mentioned that as a consequence the USA is now subsidizing drug development for the world; a situation that is unsustainable in the long-term.

I briefly touched on the issue of off-label prescribing and the legal case that is currently being assessed under EU law between Bayer and the NHS. Bayer markets aflibercept (Eylea) and is challenging the rights of the NHS to allow the off-label prescribing of bevacizumab (Avastin) for wet macular degeneration. If Bayer wins then this will have implications for the use of rituximab to treat MS, an off-label indication.

I then discussed politics and the link between poverty and poor health outcomes and the need for us to address inequality. The UK has one of the greatest inequality gaps in Europe and may explain the disparity of DMT prescribing in the UK. Inequality is certainly one of the reasons why certain segments of the UK population voted to leave Europe. Inequality is a problem and Society needs to tackle it rather than ignoring it. 

How I could not resist presenting the threats and advantages of automation (robots) and artificial intelligence (AI) on the care of MS. I suspect algorithms are coming sooner than we realise to the management of MS.

I closed my presentation on the subject of MS prevention. I can imagine a world in which an EBV vaccine is licensed to prevent MS and other diseases caused by this virus. Wouldn’t that be wonderful? A low cost vaccine would be the most effective way to deal with the economic burden of MS. 

Read this post from last year for a further debate on high-cost drugs in the US.

Here’s my talk, please leave your comments below:


About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


    • Yes, it would still occur but Pharma would become risk adverse. The latter means drug development will be slower and more time will be spent on derisking development programmes.

    • High cost drugs feed the future pipeline and then of course the gravy train. Pharma is a massive part of the wider economy. However, they do need to be regulated as they will charge what they can get, which is not in the best interests of society.

    • I realise that I look forward each morning now to read what you are saying and somehow your energy and enthusiasm almost always come up with the goods. When I am not enthused, to the point of commenting, it is because it was too technical for me to even begin on.

      Today I am enthused.

      I feel that, when you speak of "treat early" you speak of me. At EDSS 8.5 (hoist transfers only) I consider that, for years now, my disease has been "weelchairitis" rather than MS and all he endeavours that I try to seed the, worldwide, availability of are directed to that diagnosis.

      The biggest, by far, is the TrailRider for wheelies to keep hiking but the folding travel bed pole (soon to come on market) and the motor-assisted pedal exerciser (a version of which has transformed my addled body) are just some of the many "crazy" pebbles I have dropped in the wheelchairitis pond.

      Yesterday I was put in touch with Tom Shakespeare, an English disability advocate, and listening to one of his Radio 4 pieces "Dementia Rights" (I am now living in a high care home which drips with dementia) led me to propose a research trial to the (receptive) manager. The trial would evaluate the use of AI robots to have those repetitive, and resource hungry, conversations with a demented resident. My, research active, ex colleague Andrew may well agree.

      Keep on kicking goals Gavin

  • I think you should re-engage with your off-label DMT initiative. I doubt the MSIF has the will to make it happen.

    • We need help. We have only so many hours in a day. What we need is a fellow dedicated to this project who can do the work for 24 months then it will work. They person would need international experience and some political nous. Something in the order of £100K would do the trick; salary for 2 years with overheads. They could work between Barts-MS and possibly the MSIF.

    • You can't expect staff to work for free. We have full day, and night, jobs, which is why this initiative has stalled.

  • I think it's very unlikely that an EBV vaccine would provide sterilizing immunity. It is such an effective virus and has figured out ways to evade the immune system over an evolutionary timescale.

    • You could have made the same argument for smallpox however vaccination has made it extinct. Regarding EBV, if you don't try you'll never know.

  • "Treat-early and effectively to prevent disability". Unsustainable cost of Dmd's.

    Hnmmmmm, if only there was an effective and cost effective way to halt disease progression in the majority of pwMS.

    Hmmm, I wonder. If only there was a way.

    • I'm not sure we will be able to reliably stop/slow progression without the addition of an effective neuroprotectant in addition to DMDs/HSCT. Regrettably, progress on this, at least clinically, is still lamentably slow.

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