#MSCOVID19: woods for the trees

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Barts-MS rose-tinted-odometer: ★★★★

I am sure you know the term “I can’t see the woods (or the forest) for the trees”. This means you are unable to understand a situation clearly because you are too involved in it. I think this is what has happened to the MS community when it comes to managing multiple sclerosis during the coronavirus pandemic. 

We are so fixated on the potential risks associated with DMTs and COVID-19 that we are ignoring the elephant in the room, age and comorbidities. It is now clear that moderate immunosuppression from some of the MS disease-modifying therapies (DMTs) does not increase one’s risk substantially of getting COVID-19, severe COVID-19 or dying from COVID-19. The real risk factors for getting severe COVID-19 are age, progressive or advanced disease, which is closely associated with age, and the presence of comorbidities. 

I presented the ocrelizumab COVID-19 data at a satellite symposium on day-1 of our fourth triMS.online conference and it was clear to me that the risk associated with anti-CD20 therapies are trumped by age and comorbidities. It is also clear that the pharmacovigilance data for ocrelizumab has to be biased in that patients on infusion therapies and those with more severe disease needing hospitalisation, ITU admission, ventilation and sadly those who die from the infection, are more likely to be reported. People with MS who have mild or even moderate COVID-19 are clearly less likely to be reported by their HCPs. Therefore, the current data is likely to be the worst-case scenario. 

Another factor that is not being captured in this data is the fact that the outcome for COVID-19 has been improving. As treatments for COVID-19 and medical know-how, for example, how to manage ventilation and thrombotic complications of SARS-CoV-2 infection,  have improved the mortality from COVID-19 has almost halved. 

The issue of vaccine-readiness, which also raises its head frequently, is like the greasy pig; you may be able to catch the pig but it is almost impossible to hold on to. This is why I suggest batting vaccine readiness into the long grass and addressing the issue if and when a vaccine finally arrives. It has also become apparent as the immunology of coronavirus infection has become better understood that T-cell immunity, in particular CD8+ T-cell immunity, is likely to be the dominant player in driving immunity from primary infection and reinfection. Even if people who have been infected and do not seroconvert or lose their antibodies quickly, are highly likely to be immune to reinfection. Even if they are reinfected with the SARS-CoV-2 virus that causes COVID-19 they are likely to get asymptomatics infection or mild disease. Please note reinfection rates at present are very rare and get much more air-time than is warranted.

In my talk, I concluded that MS is a bad disease and we should manage it as we would have managed it prior to COVID-19.  I think untreated or under-treated multiple sclerosis is a bigger problem than COVID-19 for people with MS at present. 

I also stressed that prehabilitation is really important for people with MS and remains so. If you can, you need to do everything possible, to optimise your general health so that if you get COVID-19 you give yourself the best chance of recovering without complications. 

To quote from Chalie Mackesy’s bestseller “The Boy, The Mole, The Fox and The Horse”, when the boy asks the horse “What’s the best thing you have learned about storms?”. “That they end”, said the horse. 

This quote not only sums up my optimism but has also made me realise that the storm clouds have lightened, the thunder and lightning have moved over the horizon, the rain is not as hard as it was at the beginning of the storm and the winds have dropped in intensity. I get a sense that the storm will pass over very soon. 

I must compliment and thank Roche for releasing the ocrelizumab data to the MS community. The only other company that has attempted to do the same has been Merck in relation to their cladribine data. However, the data for cladribine is a lot less robust because of the smaller number of patients who have had cladribine and have subsequently gotten COVID-19. 

The ocrelizumab and cladribine data are what they are. Having the data in the public domain, however, puts us in a much better place. We can quote the data to our patients, reassure them about the potential risks, which are small, and use it as part of the decision-making process to manage their MS as best we can during the pandemic. 

CoI: multiple

Twitter: @gavinGiovannoni               Medium: @gavin_24211

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.

16 comments

  • Totally agree about the elephant in the room. Age and comorbidities have been reported across all COVID19 studies to be associated with high morbidity and mortality and good to hear from MS data that it is not different. Early in COVID19 era, MS patients were under treated or untreated well because of the unknown. I like prehabilitation (underutilized term), as a way of life not only for MS patients. Greetings for such talk and day

    • Yes, I did not mention rituximab for compliance reasons. As this was a pharma sponsored symposium it was essential not to mention off-label compounds as it could be construed as off-label promotion. Roche/Genentech also manufacture and market rituximab.

  • Why is there so little acknowledgement of ‘long covid’? So much emphasis on how only older people need to worry. I know someone with long covid, a young person, and it is really not good. And even loss of smell, this can be long term, perhaps permanent?

    • Please read this post on COVID and anosmia.

      Long COVID needs a bit of thought; it is probably a variant of post-viral fatigue syndrome, but may be linked to other factors. I think we need to wait for more research to emerge possibly in pwMS before we can make definitive comments on how to define and manage it.

      • Would you be willing to do a post on long covid and/or post viral syndrome? Any evidence based or theoretical (but with low risk) interventions that people can do to try prevent it if we are unfortunate enough to become sick from covid-19.

  • This is a hopeful post. I wonder will London MDT for AHSCT start to plan for how they may safely transplant ms’ers who had been approved

  • “As this was a pharma sponsored symposium it was essential not to mention off-label compounds as it could be construed as off-label promotion. ”

    So worried about offending pharma meanwhile they loot our treasuries w/no shame.
    Lemtrada costs $100,000 first year in u.s. and people can’t even afford the $20,000
    medicare co-payment..So Sanofi was attempting to pay it for them.

    “In this case, a whistleblower came forward with information alleging that Sanofi was paying kickbacks to physicians and patients. The scheme was allegedly perpetrated by making the cost of Lemtrada extremely high. One course of treatment costs about $100,000 making the Medicare Part B co-pay about $20,000.”

    “The fund would cover the patient’s Medicare co-pay in violation of the Anti-Kickback Statute, and then Sanofi would bill Medicare for the rest of the unnecessarily costly treatment.”

    Unnecessarily costly treatment is right when tourist hsct is only $50,000

  • I agree and I hope that all neurologists as a whole take note of this. It often feels that infection risk is more important to neurologists than treating MS. My observations are that MS is under treated due to this at great harm to the patient as MS is an awful disease. More data on MS patients response to covid19 and long COVID are essential as this on top of MS no doubt would be horrendous.

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