I was asked a question during one of the sessions at AAN 2023 about what I thought the greatest unmet need is in multiple sclerosis. My answer was, ‘It depends on your worldview’.
#1. Prevention
Wearing a public health hat, the greatest global impact has to be MS prevention. Preventing or reducing the risk of someone getting MS in the future is the holy grail of MS. I think we are closer to achieving this than we think. I give an effective EBV vaccine programme a greater than 80% chance of doing this. If we don’t try, we won’t find out.
#2. Flipping the pyramid
If I had early MS, it would be the rapid adoption of innovations. Too many people with established MS (pwMS) are undertreated with disease-modifying therapies (DMTs). I think we have won the argument about ‘Time is Brain’ and the need for early diagnosis and treatment. But the argument about ‘Flipping the Pyramid’ and offering high-efficacy DMTs first-line, or at least early, still needs to be won. Too many pwMS are having their brains shredded by being on low-efficacy treatments. Flipping the pyramid includes allowing people with very active MS to have access to immune reconstitution therapies (IRTs) first-line (cladribine, alemtuzumab and AHSCT). I feel very strongly about this as I am convinced a small minority of people treated with IRTs very early may be cured. Yes, cured of having MS.
#3. Smoldering MS
For people with established and more advanced MS, smoldering disease is a major unmet need. How do we deal with the ongoing end-organ damage occurring despite pwMS being NEIDA (no evident inflammatory disease activity)? As you know from reading many of my newsletters that this is an ongoing initiative and is going to need a major push from all MS stakeholders to firstly acknowledge the problem and secondly to create the regulatory environment to allow trials to go ahead using biomarkers rather than clinical outcomes to get drugs licensed. Please note I include the viral hypothesis of MS under smoldering MS. We need antiviral trials targeting EBV to be started ASAP.
#4. Marginal gains - symptomatic treatment
From an MSology perspective, I would like to sort out several day-to-day symptomatic problems pwMS complain about and have to deal with on an ongoing basis. These include fatigue, cog-fog, poor sleep, and bladder & bowel problems. In reality, it is the symptomatic problems that emerge as a result of having MS that cause the greatest burden for pwMS. These not only reduce quality of life but are likely to speed up the progression of disability. Sadly, many pwMS accept these symptoms as the new normal and adapt their lives to cope. This attitude is wrong. You don’t need to accept these symptoms as the price of having MS. We can do much to manage and improve these symptoms. Please be aware optimising small things across multiple domains, when added together, will have a major impact on your MS and its outcome. This principle underpins the ‘marginal gains’ philosophy and the holistic approach to managing MS.
#5. Healthcare redesign
Finally, a large unmet need is health literacy and ensuring pwMS are sufficiently empowered to manage their own MS and not accept second-best. I am very aware that most healthcare systems are not configured to optimise the management of MS. The NHS is no exception. We need to rethink MS care from a systems perspective and redesign our services to be much more reactive to the needs of pwMS.
I have said enough; it is your turn. What would you prioritise in terms of the unmet need in MS?
Subscriptions and donations
Paid subscriptions to MS-Selfie are being used to administer the Newsletter and associated MS-Selfie microsite, which is now open to all readers. At the request of several readers, I have now added the option of making a one-off donation. To keep this initiative open to all readers, I would appreciate it if those who can afford a subscription to subscribe. For active paying subscribers, thank you; your contribution is much appreciated. Because of the falloff in paying subscribers, I am considering returning to a paywall that will give paying subscribers six months of unlimited access to all newsletters. At the same time, free subscribers will have a wait to access the newsletters later, not as an email, but on the substack site.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your own healthcare professional, who will be able to help you.
AAN 2023: what is the greatest unmet need in MS?